ME/CFS: Harassment of Researchers

November 17, 2012 at 6:14 pm (Miscellaneous) (, , , , , , , , )

As has previously been reported in the press, scientists researching ME/CFS have faced abuse, threats and violence from some activists. Let’s take a look at what this has achieved.

Abuse, Harassment and Threats

Michael Sharpe was subjected to what the Guardian describe as a “hate campaign” after he was involved in a study that suggested that a psychological technique known as cognitive behavioural therapy could help some people with ME/CFS. According to the newspaper, “He had already been stalked by one woman who was subsequently found to be carrying a knife at one of his lectures.”

Myra McClure published a paper indicating that studies linking CFS to the virus XMRV were wrong. She apparently had to withdraw from a US collaboration because she was warned she might be shot.

Then there’s Esther Crawley, who:

has spent years trying to unravel the causes, but her refusal to accept that the condition is a result only of organic external factors has resulted in her being deluged with hate mail from extremists. “You evil bastards … time is running out for you so you have [sic] better start denouncing your flawed inhumane therapy and pray to God for forgiveness,” said one.

When the news of one researcher’s death was announced on an internet forum for people with ME/CFS, it was greeted by one poster as “very good news”. Their post was ‘liked’ by three other members of the forum. Here it is, in full, with only the researcher’s name removed:

The only way we are to get research and treatments into ME is for these criminals to die off. This is very good news as [name redacted] caused so much unnecessary suffering and deaths. He has blood on his hands. When the rest of his partners in crime die then and only then will we start getting proper treatment. This is the only way that science proceeds- the old guard have to die and then the new researchers start to do real science.

He has been very lucky as he died quickly unlike so many people like with ME who suffer long and painful death.

His family should be ashamed of his legacy as he caused so much human suffering.

According to the Guardian, Simon Wessely has installed speed dial phones and panic buttons at the police’s request. Here is an article he wrote for The Spectator. Wessely points out that the extremists are a minority that bear little resemblance to the patients he sees, he describes some of the abuse and harassment, he refers to dishonesty from some – “the deliberate falsification of what we have said or written” – and he discusses what is behind the harassment (essentially, misunderstanding or misrepresentation of the views of researchers and the nature of illness).

Trawl the internet, however, and you will find some who claim that I and other professionals are the architects of a vast conspiracy to cover up the real nature of the illness, that we portray CFS sufferers as malingering neurotics. They say we are denying its sufferers their treatment and benefits by falsely claiming that the condition is ‘all in the mind’, i.e. non-existent— which has never been our view. The evidence is that, like most illnesses, CFS is a mixture of the physical and the psychological.

[...]

For the outraged minority, however, being referred to a psychiatrist or psychologist is tantamount to being told that the symptoms are imaginary. It is understandable that people are sensitive on this matter. But the solution must be to address their misunderstandings, rather than assuming that CFS will only be taken seriously when psychiatrists are removed from the scene.

Consequences

Wessely also writes that researchers are deterred from studying CFS: “the malign tactics of the minority have helped to delay scientific progress: numerous scientists in other fields, including neurology, immunology and virology, have dipped their toes in the water of CFS, been scalded and given up.” There’s Myra McClure for one, who withdrew from a US collaboration because she was warned she might be shot.

It’s not just researchers who are put off. Max Pemberton writes that the same is true of journalists. Pemberton wrote an article that the activists were unhappy with. So they threatened him, discussed where he lived, and posted photographs of his home online. He writes that he’d happily champion their cause, but after his experience he really doesn’t want to get involved and that:

Since then, medical journalists have told me that few of them would choose to tackle a story about ME because of the abuse it attracts. Media doctors I consulted agreed it was the one subject that they avoided at all costs. This chimes with the researchers’ original point: that the minority of militant sufferers are doing the majority a tremendous disservice by scaring off doctors and scientists from working in the area.

Wessely is now the joint-recipient of the first John Maddox prize for standing up for science. The efforts of the extremist activists seem, if anything, to have enhanced Simon Wessely’s reputation. In contrast, the reputation of ME/CFS patient advocates is in danger of being tarred by the extremist brush. Not that I expect to hear from them about it – as Max Pemberton writes, “I had received emails from people with ME thanking me for my piece, but they explained they dare not speak out for fear of retribution.” The people you do tend to hear from are those who visit blogs and forums to defend the threats or deny their existence. Which is what happened when Noodlemaz wrote about the John Maddox prize.

If you want to find out more about a condition then you need researchers to study it. If you want to raise awareness of a condition then you need journalists to write about it. Deterring scientists and journalists from getting involved by threatening them or their colleagues can only be counter-productive.

In defence of the indefensible

The people who defend the threats, deny their existence, or claim that researchers have brought the harassment and abuse on themselves (for example here, and on various internet forums) aren’t helping.

Here are a couple of examples from forums: “I definitely do not defend or justify the actions of the abusers, exactly the opposite, but am suggesting that just maybe, his own actions over the years may have provoked it just a tad. The ‘no smoke without fire’ adage – people wouldn’t suddenly start sending reams of hateful emails to some random person for no reason” & “If he didn’t bring it on himself, even ‘just a tad’, by his own actions, who did?” (here we have victim blaming – if Wessely is a target for abuse, he must have done something to deserve it); “One of the most powerful and protected people in the UK is complaining about being ‘abused’ by some of the sickest and most powerless and seriously abused people in his society (a situation he was instrumental in inflicting upon them). But he is the victim, and gets a medal for it?” (in this version, Wessely is not the victim, the people sending threats and abuse are); “There has never been any evidence provided that a person with M.E. has sent him a death threat. If such letters even exist they could have been sent by anyone, including himself. No-one has ever been arrested or prosecuted for making serious threats” (in this version, Wessely is not a victim because there were never any threats); “Where’s all the death threat letters and why didnt he go to the police about them and have it followed up?” (another poster doubts the existence of the threats and asks why Wessely has not gone to the police – it is clear from the Guardian article that is the first link in this post that Wessely has in fact contacted the police).

Publishing research and discussing it does not invite death threats, harassment or abuse. Wessely hasn’t brought this on himself, and nor have the other researchers. The responsibility for the abuse, harassment and threats lies with the small number of extremists who conduct hate campaigns against people they disagree with. I am baffled by the apologists who insist otherwise.

Update, 18 November 15:15

The first forum quote I use has been amended and a second quote from the same person added as the poster was unhappy with my original snippet. They have also said that they doubt the validity of my other quotes. Here are links to the threads where the comments come from so you can all see them in full, in context.

Provocation & Wessely bringing it on himself.

Wessely is not the victim.

No evidence of death threats.

Why didn’t he go to the police?

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397 Comments

  1. Amy said,

    Thanks for writing this, although the people who need to absorb it most will of course dismiss it out of hand.

    I have had severe CFS/ME for decades, and am bed bound. To reflect on the extent to which militant extremists are setting back the cause of research and possible effective treatments, and preventing balanced and awareness-raising media coverage etc scares and depresses the hell out of me.

    I want to use the old cliche “not in my name”!

  2. Yersinia said,

    I agree. We needs lots of research of all types to get the best of treatments and if possible prevention of this horrible debilitating illness that has blighted the lives of two of my close relatives. We needs to investigate the possibly absurd interventions to be able to discredit them scientifically or to hold our tongues and acknowledge they may work for some if that is what findings show. And we need to find ways to treat symptoms until a cure and prevention can be found. Let the researchers get on with their jobs!

  3. RJC said,

    “I will argue that ME is simply a belief. A belief that one has an illness called ME”.

    CFS in children, covers a broad spectrum of problems, perhaps even involving the Munchausen’s by Proxy Syndrome”.

    Are death threats or any acts if aggression, abuse or violence acceptable? No, absolutely not. People, however, are angry because Wessley’s claims above are simply not the truth. His constant rhetoric for 25 years has seen patients dismissed and ridiculed by their own doctors and have struggled to get benefits and appropriate care and treatment.

    “Many patients receive financial benefits and payment which may be contingent upon them remaining unwell. Gradual recovery may therefore pose a threat if financial loss”.

    Apparently we stay ill to remain in abject poverty. The mention of children above is particularly damaging. Ean Procter? Children with ME today are still being threatened with forceable removal from their parents and indeed some children are actually removed. Their crime? Being ill and struggling to go to school regularly. That is Wessley’s legacy.

    Threats and violence are not acceptable. Reasoned anger expressed in a factual, constructive form, however, is.

    If anyone is genuinely interested you may wish to read a litany of Wesselyisms here: http://www.meactionuk.org.uk/Quotable_Quotes_Updated.pdf

    We aren’t treated like we have an illness at all, physical or psychiatric.

  4. John Sargeant said,

    Reblogged this on Homo economicus' Weblog and commented:
    Researchers into ME should not be facing this … Story shared by Simon Singh.

  5. Martin said,

    This is not quite the case here, but it does raise the question: if researchers are enthusiastically following possibly absurd lines of investigation into a disease, and this has an effect on the popular perception of those suffeering from that disease, then who holds the responsibility of that effect? If that effect is harsh it seems reasonable to expect people to be angry. Who can they be angry with?

  6. Mike Ward said,

    RJC Those are misquotaions which have been covered many times before

  7. Martin said,

    Mike that’s as easy to say as it is to misquote people. There’s some of his speaking notes (and unless someone’s getting very hoaxy) here:

    http://www.meactionuk.org.uk/wessely_speech_120594.htm

    There’s some fairly unambiguous statements in there, in context and everything. “ME is a belief about having ME”. Now there are some issues with what gets labelled by whom and for what, but if people have been diagnosed with something labelled “ME” instead of, say, “CFS” and then someone comes along and claims that the label “ME” is something that’s not real, I can see why people would get angry. That does of course have unpleasant consequences as jdc points out, but I don’t see that researchers should expect to make public comments and claims without consequences.

  8. Annie said,

    I would appreciate you reading this letter by Professor Malcolm Hooper in response to the John Maddox prize awarded Professor Wessley the other week. http://www.meactionuk.org.uk/Wessely_John_Maddox_Award.htm

  9. Annie said,

    Of course,, I don’t condone death threats to any researchers and I’m sure there may have been a few but they have been ramped up out of all proportion. The wider issue is to note the utter frustration of M.E patient groups with Wessley’s theories. The link I gave above is long, I give a quote from it:

    “Simon Wessely’s efforts to psychologise a devastating physical illness have outraged pretty much the entire population of people affected with “CFS” and are decried by every single patient group….There is far more (and stronger) research supporting a physical origin for CFS than there is supporting Wessely’s view, and this body of research is growing every day. Virtually every CFS expert outside the UK treats this as a physical disease…Wessely is far from a hero of science, nor a bold defender of good science…he is one who wilfully ignores scientific advances in ‘his own’ field (though, since he is a psychiatrist, the important research isn’t in his own field)…

  10. RJC said,

    Mike. Where are these misquotations covered? How could the large majority of those quotations be taken out of context? We know what he said and did because we lived and live through the consequences. I was sent for CBT where i had to sit through ten hour long sessions where I was told again and again and again that my illness did not exist and that I merely had a false illness belief. I was told by a doctor that ME is an illness of “eloquent introspectives”, another that I was “running away from challenges in my life”. I have been accused of attention seeking. What actually happened is that i was living a happy, successful and not remotely stressful life and i got ill. i have fought to retain a normal life for 15 years but my body will not let me and I have spent at least half of that time in a bedroom, on my own. Some way to get attention. Services for the most severely ill are nonexistent and MRC funding for biomedical research has been pitiful compared to that given to the Wessely psychiatrists. Those attitudes towards our illness didnt come from nowhere. Those quotes have been in the public domain and repeatedly published by academics and doctors highlighting SW’s influence. To my knowledge he has never taken action against those people and they remain online, readily accessible to this day. His merry band of disciples including Peter White and Trudie Chalder continue to claim that ME is not an illness, but simply a behaviour.

    So, as I said above, we have a right to be angry, but that anger must be channeled through constructive criticism, not threats and abuse, which do the vast majority of sufferers a huge disservice. There are a small group of people online who take things far too far. There are nearly 250,000 of us who do not behave in that way but who want to be treated with respect by the medical profession and who want proper NHS services and extensive biomedical research. We want some help to get better and I don’t think that’s too much to ask.

  11. S said,

    RJC, it depends whether you can access the full paper by Wessely (I’ve got a copy open now), or are can only see what ME Action have quoted. For instance this quote:

    “Many patients receive financial benefits and payment which may be contingent upon them remaining unwell. Gradual recovery may therefore pose a threat if financial loss”.

    Actually appears in the paper as this:

    “Many patients receive financial benefits and payments which may be contingent on their remaining unwell. Gradual recovery may therefore pose a threat of financial loss before a permanent earned income is confidently established. It may be necessary to explore ways of allowing some overlap of work and payments in order to avoid this difficulty.”

    The quote comes from a section in the paper called “Employment and financial benefits”, and is about helping the patient manage work and finances – for instance, finding out the attitude of the employer in order to better help a patient with a gradual return to work.

    This is quite different from the original suggestion that the patient is remaining ill to stay on benefits.

    I appreciate that you may not have access to the full paper, though.

  12. Mike Ward said,

    Thanks for S for beating me to it.

    Good to note you are against the harassment though RJC. I, for instance, am against the rubbish Gillian McKeith foists on us via her various media efforts but I don’t send her threatening letters. I actually think that type of thing isn’t just reprehensible but counter productive

  13. peter said,

    This is all very perplexing as an ME sufferer myself I really respect Lipkin the person who has now disproved XMRV as causing ME CFS and I was surprised anyone feels ME folks are so militant

    Nature | News: Q&A
    The scientist who put the nail in XMRV’s coffin

    http://www.nature.com/news/the-scientist-who-put-the-nail-in-xmrv-s-coffin-1.11444

    W. Ian Lipkin tells Nature about his efforts to validate the link between retroviruses and chronic fatigue syndrome.

    Ewen Callaway 18 September 2012

    What do you say to the CFS community to stop them from thinking that scientists will turn their back on CFS when this study is complete?

    I have to agree with them that they’ve not received the attention that other groups have had. They’ve tried to take a page from people who work in autism, who looked at HIV/AIDS, breast cancer and so on, and the CFS community has not been as vocal and effective as they might be

    So there you have it not very vocal according to this world renowned expert ,not very affective, not given much attention and those with ME now deserve to be arrested as well for being so militant that is very strange indeed ?. Michel Sharpe Simon Wessely, Max Pemberton who are all psychiatrists are working so very hard on ME or CFS i hope the truth will come out soon better understanding of abuse is needed.

  14. Crumb said,

    re: falsely claiming that the condition is ‘all in the mind’

    There was a discussion amongst patients which mentioned that quote here: http://forums.phoenixrising.me/index.php?threads/simon-wessely-and-all-in-the-mind.13979/

  15. peter said,

    I should add that Michael Sharpe Simon Wessely, Max Pemberton who are all psychiatrists are working so very hard on ME or CFS trying to prove ME it is psychalogical .
    There is hardly any funding given to other ME Researchers as an example ME Reaserch UK a charity set up to investigate biomedical research into ME/CFS receive no government or other public funding and rely on funding from ME patients.

    .

  16. Amy said,

    Peter, it has been a long time coming, but the MRC did put out a call for research proposals for areas of ME research other than studying behavioural interventions.

    A summary of the currently funded studies can be found here:

    http://www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC008582

  17. MrsP said,

    @peter. Wessely has not spent his time trying to prove CFS/ME is psychological. He has tried to find the cause/s whether physical or pyschological and come to the conclusion that until a cause is found the main thing to do is to find a treatment that at least helps and is the best available at present. He as done “biological”research See his web site.

    http://www.simonwessely.com/faq.html

  18. wake up said,

    None of this has ever been proven. There is no court case or police report to back up these comments.

  19. Angela Kennedy said,

    There has been a sustained and ongoing media campaign claiming ME/CFS sufferers and supporters are criminally harassing researchers. There are key problems with these articles/radio programmes:

    1. The allegations themselves are unsafe. For example, an anonymous
    comment that “you will all pay” was deemed a ‘death threat’ last summer, when no threat was actually made, and the comment appeared to denote instead a prediction of eventual accountability for mistreatment of ME/CFS sufferers. Ironically, David Cameron used the phrase “you will pay” towards rioters a few days later, without it being deemed a ‘death threat’.

    2. There has also been a false categorisation of legitimate, non-criminal action by ME/CFS sufferers and their supporters (such as requests under FOI legislation, official complaints through various public agencies etc.) as ‘malicious harassment’, or ‘abuse’ or ‘intimidation’. Legitimate actions are cynically juxtaposed with alleged acts of criminal harassment to construct non- criminal parties as harassers.

    3. These articles/programmes then go on to misrepresent any objections to psychogenic dismissal of the illnesses diagnosed as ME or CFS. Reasonable objectors have been falsely deemed ‘extremist’, even ‘criminal‘, but no chance is given to such objectors to put forward their reasonable positions.

    I am a social sciences researcher and lecturer, and the parent of a person diagnosed with ME/CFS. In 2007 I was once falsely accused of ‘personally harassing’ Professor Wessely by a Wikipedia administrator, claiming Professor Wessely had told him this himself. I publicly oppose and critique psychogenic explanations for ME/CFS, on both a political and academic level. I have NEVER harassed Professor Wessely or contacted him, though he once wrote an unsolicited email to me, after a critical comment I made about flaws in psychogenic explanations was quoted in a parliamentary debate in 2004. When I wrote to Professor Wessely’s employers, asking that he clarify that he had no part in the false claims made on Wikipedia in 2007, they sadly refused to provide that clarification. Last year in the British Medical Journal, I found that people who wrote to employers were being falsely juxtaposed with alleged ‘death threat’ makers, as harassers.

    I have just written an academic book critiquing psychogenic explanations for physical illnesses. I am therefore an academic critic of Wessely’s and others’ claims about ME, CFS and other conditions. This is a legitimate practice, and to be falsely accused of harassment is repugnant. People are quite right in asking for substantiation of highly problematic claims, especially as these claims are being used by various parties to wage hate speech against the ME community and innocent advocates.

    As I have done many times, I am more than happy to repeat that I condemn any actual harassment of researchers.

  20. MsDevilin said,

    @jdc, I was the one who asked you to change the quote you extracted from a full-length forum posting by myself on Bad Science because the quote was taken out of context and the meaning was changed to appear more negative than was intended. Just wanted to say thank you for fixing it.

  21. peter said,

    MrsP said, @peter. Wessely has not spent his time trying to prove CFS/ME is psychological. He has tried to find the cause/s whether physical or pyschological and come to the conclusion that until a cause is found the main thing to do is to find a treatment that at least helps and is the best available at present. He as done biological”research See his web site.

    From Peter

    Interesting reserch here i think Simon Wessely as a psychiatrist would be surprised that you think he was less certain nowadays that ME is psychalogical maybe you doubt his confidence in all his maistream work on ME ? . do you believe he has changed his mind here you might be disappointed?

    As with the abuse of Simon Mikovits who’s theory XMRV was disproved faced hostility from the media and obviously Simon disagrees with abuse of any reasercher . Many ME patients want to give as with ME Research UK helping researchers with Funds they have also faced abuse from the media and derision from many sides in supporting Science .
    MrsP also said, until a cause is found the main thing to do is to find a treatment that at least helps and is the best available at present.

    from Peter

    I agree until a cause is found the main thing to do is to find a treatment that at least helps and not give up hope.

    As i am fully aware there is no known cause of ME and no cure i am realistic and realize the lightning therapy offered by Esther Crawley is not a cure as no cure has been found so is at best only a little help for my seveare ME .

    Disapointingly for me CBT and GET as recommended by the psychiatrists Max Pemberton Michael Sharpe and Simon wessely also falls short of a cure i have also read about patients who’s ME was made worse by them so chose not to try therapies .

    Other people may take a different view it is entirely up to them .im glad you care so much though MrsP

    .

    There has been deaths of people in the UK such as Emily ollingridge her funeral was held on 6 November 2012

    she died in hospital in the UK from ME and many people herewe in the USA and or england are struggling with no support whatsoever a similar experience as suffered by AIDS patients so more funding from the MRC and goverment charitys and anyone is needed.
    Amy said,

    November 18, 2012 at 1:02 pm

    Peter, it has been a long time coming, but the MRC did put out a call for research proposals for areas of ME research other than studying behavioural interventions.

    The small but welcome amount is desperately needed for biomedical reserch thank you very much Amy for pointing this out it is interesting to see the reserch hopefull more will get funding from the MRC not just the Chronic Fatgue aspect of ME everything needs investigation we need more reserch

    .Dr. Ian Lipkin, a virologist at Columbia, brought in to investigate XMRV by the N.I.H seems more able to handle the tricky ME CFS situation and those who might disagree with him as he has has mentioned he thinks ME patients are not vocal enough or effective in campaigning and as i have already said i respect and i agree with Lipkin on this also Malcome Hooper in england
    has been battling for ME patients and better understanding for ME patients for years
    Dr. Ian Lipkin, a virologist at Columbia was asked about the CFS or ME community and the abuse of Mikovits this time from a negative press

    The scientist who put the nail in XMRV’s coffin

    W. Ian Lipkin tells Nature about his efforts to validate the link between retroviruses and chronic fatigue syndrome.

    Ewen Callaway

    18 September 2012
    Do you think the CFS community and the scientists involved will accept these results?

    I certainly hope so. I feel very badly for Mikovits, [her co-author] Ruscetti and Harvey Alter [a hematologist at the NIH Clinical Center in Bethesda, Maryland, who led one of the CFS studies]. Mikovits in particular — she has lost everything. She can be wrong but she’s not a criminal. She has been honest in a respectful, forceful way and said that we have to conclude that we were wrong. You can imagine how difficult it must be, and I think she should be applauded. Lots of people wouldn’t have the balls to do that. She has come across as a scientist who really believes in the importance of truth.

    .Again i might not agree with makovits and she may have got it wrong but Lipkin respected her enough to include her on his team investigating XMRV later reserch found XMRV not to have caused ME both showed remarkable dignity and courage in the face of adversity

  22. peter said,

    i ment Emily Collingridge who died from ME her funeral was held on 6 November 2012 i appoligise for the error

  23. MrsP said,

    The fact that people die from CFS/ME does not prove it has no psychological component. People do die from illnesses such as anorexia nervosa, schizophrenia etc. biopsychosocial and psychiatric illnesses are very real and can be life threatening. They also produce abnormalities in various physiological processes.

    There may turn out to be a “biological” cause at least for some at present diagnosed with CFS/ME but until then patients have to at least try the evidence based treatments. It is particularly important for sufferers to understand that the illness does not mean you will have it necessarily for life . People do recover and it is important to try to prevent patients deteriorating to the point where de conditioning itself is life threatening.

    This woman’s death is tragic and ME groups attacking researchers who are investigating possible causes for some sufferers does not help.

  24. RJC said,

    Mrs P. On the latter point in your post we are all agreed. Harassment, abuse etc is unacceptable and counter productive.

    The problem with the above is that people die of anorexia/schizophrenia because of activity or actions caused by altered perception/thought processes. You cannot apply this to many people with ME. Firstly, many who have been ill for a long time regularly exercise beyond their limits, either by necessity at work or school or choice. Although I’m severe again, two years ago I was mild/moderate, going to the gym twice a week and still extremely symptomatic the day afterwards. I was also looking after my daughter 24 hours a day and previously going to work and feeling horrendous every day. I was fit, pushing my body way past it’s capabilities. My symptoms were not down to deconditioning. The result of all of the above was a huge relapse. It may apply to some, but most of the sufferers I know, bar the most severe, do not avoid all activity.

    ME/CFS is not normal tiredness. It’s not the aches and pains you get after a healthy person exercises beyond normal levels. It is an exhaustion through to the bones, the middle of your brain. As someone who, at various points in life, took physical fitness very seriously I’m well placed to comment. The reason that many are severely affected is that they ignored their bodies protestations for a long time until it simply refused to do any more. The activity avoidance idea that you imply above may be an issue in some but not most. I was largely bedridden for six years between 1998-2004. When I felt better I simply got up and started walking again, building up slowly. After all that time my body tolerated it because it was well enough to do so. There was no PEM, just the normal aches and pains that you’d expect when muscles are tested.

    The biggest frustration is that many doctors simply don’t/won’t listen to the patients. As the Sophia mirza case proved, doctors who simply won’t listen and think they know best can and does having tragic consequences.

  25. RJC said,

    On the recovery point, few of us have given up hope, but after a period of illness I have come to accept that I’m probably stuck with this to some degree. Full recovery rates are very low. Even SW has admitted that CBT does not have good long term outcomes and, given the refusal to publish the patient outcomes from PACE, I presume the PDW etc have discovered that for themselves with both that and GET. If we could exercise ourselves well we’d have done it already. Many of us have tried very hard to do that, with, often, devastating consequences.

  26. MrsP said,

    Just one point on the publication of outcomes. I believe the trial authors have said there will be more published on PACE including outcomes. You cannot quickly drum up a paper at the request of a member of the House of Lords. I do not know enough but would hazard a guess that in such an illness characterised by periods of relapses and improvements you need to look at outcomes after agood length of time.

  27. RJC said,

    A freedom of information request was submitted for the outcomes as promised at this juncture in the published pre trial protocols. First the authors promised to publish them, then simply refused to release the information, then claimed that that data doesn’t exist. They are now saying that further data will be published, with new, still being devised protocols. You know as well as I do that if those figures, promised as published pre trial, were positive they would have been published quick smart and to much fanfare from the Science and Media Centre. If a pharmaceutical company were twisting data and withholding outcomes like this there would be much anger and gnashing of teeth.

    I still cannot believe that PACE has any credibility given that patients who were deemed ill at the start of the trial could get worse and be classed as having returned to normal functioning.

    CBT in itself isn’t a bad thing and can help anyone with chronic illness, as long as its practiced responsibly. Its also essebtially harmless. GET on the other hand is down right dangerous for many.

  28. peter said,

    MrsP said,

    November 19, 2012 at 11:20 am

    There may turn out to be a “biological” cause at least for some at present diagnosed with CFS/ME but until then patients have to at least try the evidence based treatments. It is particularly important for sufferers to understand that the illness does not mean you will have it necessarily for life . People do recover and it is important to try to prevent patients deteriorating to the point where de conditioning itself is life threatening.

    This woman’s death is tragic and ME groups attacking researchers who are investigating possible causes for some sufferers does not help.

    Peter says
    i am all Little upset that you think i am de conditioned MrsP maybe you would be similarly upset if i assumed you were that way too.
    Also i don’t think i must at least try anything here .
    I appreciate that you fear i might die but i will not be trying any of these therapies i am still alive not haveing tried them and intend never to go near them thankyou.

    I
    RJC puts it very well that the pace trial is not trustworthy and CBT and GET from it cannot even be claimed as a cure . Some people such as Lynn” Gilderdale in england Britain OR uk who have had expert attention took her own life years after being given so called help inside a locked psychiatric hospital which i agree is tragic.
    Emily Collingridge died in hospital from ME too another tragedy Added to the lack of trust is the knowledge that psychiatry says they cant find a cause and they say there is no biological evidence for ME and say there is no point in researching that area . Why then are they treating a disease with psychological non cures without knowing it is even psychological.
    claiming it is de conditioning from some unknown cause is easy what if the cause part was the serious misunderstood disease part were exercise itself or to much of it was harmful and patients kept telling the truth about how doing to much made them feel so much worse causeing terrible relapses of terrible physical symptoms pain, illness, lack of sleep, swollen glands, a sore throat, sickness that took years to recover from as i have experienced myself and still have to this very day .Of course anyone who really cared wouldn’t want me to go back there would they .
    . Multiple sclerosis was also disbelieved now it is taken seriously they could have believed all those patients as with AIDS and saved time but of course patients are the last people on this planet to be given that privilege .
    i am sure mrsP agrees funding is good news for research and promotes science and is brilliant for science researchers and there public standing.i believe if they were still alive Lynn” Gilderdale and Emily Collingridge would be behind you as well as me supporting the brilliant researchers out there such as the two oncologists in Norway or the many others who deserve total respect and funding
    i might add here Simon Wessely a psychiatrist in the article above doesn’t like people using his research or quoting him out of context but picking bits of ME conversation from the litter bin of the Internet chat rooms and ME groups is perfectly OK and as evidence in this article of abuse it proves ME patients are wrong ?
    Lynn Gilderdale
    From Wikipedia, the free encyclopedia
    Lynette “Lynn” Gilderdale (20 September 1977 – 4 December 2008), also known on the internet as Jessie Oliver,[1] was a British woman with chronic fatigue syndrome (referred to as myalgic encephalomyeltis in the United Kingdom) who committed suicide from morphine overdose. She was assisted by her mother, Bridget Kathleen “Kay” Gilderdale, who was subsequently charged with attempted murder and was eventually given a one year conditional discharge aft

  29. peter said,

    sorry for the lack of spaces in my writeing Peter

  30. MrsP said,

    @Peter

    1 I did not say you you are deconditioned or that the illness is simply cause followed by deconditioning.I was simply suggesting that it can happen in the course of a long illness. There is plenty of evidence for the benefits of exercise and the same for the ill effects of inactivity and it is essential to try to prevent the tragic cases of young people dying.

    2. The pace trial authors have never claimed CBT and GET to be cures. They think they have shown that in mild to moderate CFS, they provide the best treatments so far.

    3 the PACE trial and its recommendations were for mild/moderate, not severe illness.

    One last point there is a lot of research going on in neurology, immunology, genomics etc. whilst not specific to CFS may provide clues to causes for further research in future.

  31. peter said,

    Peter says
    you guessed or assumed i am de conditioned MrsP, i have had this illness a long time it is just the same as asummming all mildly ill or sevearly ill patient s out there are all deconditioned i happen to be one of those people who has ME .
    Being lazy becoming de conditioned and then having A heart attack is a lot different form an illness or disease with an underling cause.
    A disease such as HIV AIDS has an underling cause ignoring it and with no treatment you are just exercising your way towards death . .

    you say psychiatry cant find a cause MrsP i say then researchers should be free to investigate the cause .

    I chose not to take these non cure therapies so enthusiastically endorsed by yourself but you insist they help i say they do not and the pace trial recomending them is flawed .
    Despite being fit and young doing more exercise recommended by expert’s made me extremely ill Mrs P you dont have ME what makes you qualified to tell me i am wrong here and should do as i am told this sounds like bullying to me .

  32. MrsP said,

    Peter

    Please read carefully what I said. You are misinterpreting my posts. I am not talking about you, and what treatment you should have, as i know nothing about you and i would not dream of recommending any treatment to any individual on the web – that is up to your doctor and yourself to decide. I am talking generally.

    And I am not bullying you and i resent the implication.

    All people are different and quite obviously if the side effects outweigh the benefits for any particular person then they may be discontinued by the patient and doctor concerned.

  33. RJC said,

    Yeah, I don’t think mrsp was personally having a go.

    I think Mrs P’s last point is key. I’m happy to try any approach to get better. The problem often comes with doctors not accepting the fact that we say something isn’t helping or is making us worse. There is a widespread perception still that we have behavioural problems and to opt out of something is taken as being tantamount to not wanting to get better. There is a large section of the medical profession who still think that we are taking the piss.

  34. peter said,

    thankyou RJC s
    i think you have it exactly right here opting out is not giveing up or wrong or a sign of not wanting to be better
    Peter

  35. K said,

    It’s hard to suffer years of illness, to know that a drug like Rituxan can help end the nightmare, but to know you can’t have that drug because people believe ME is in the mind, because SW told them so.

  36. Mike Ward said,

    I have moot seen anything written by Wessely that would indicate that he thinks CFS is all in the mind and it is certainly not my belief that it is.

  37. RJC said,

    Mike, he has repeatedly implied that ME/CFS is a modern day hysteria and that it is purely a belief. Its thanks to him that I was sent for CBT 10 years ago at which I had to sit through ten sessions telling me I had false illness beliefs. Honestly, you must have your eyes closed not to have read some of those quotes. He’s far more careful with his words these days because he knows the game is up, but he can’t take back any of his derogatory comments.

    It’s an old one but a gold one: http://godot.connectfree.co.uk/dbyd.html#3

  38. Mike Ward said,

    I do not have my eyes closed and I have repeatedly seen these quotes but normally on investigation they have turned out to be baseless or, at very least, quoted out of context. I have seen plenty of stuff which states he does not think it is all in the mind or modern hysteria but apparently people here know he doesn’t mean that when he says it somehow. am having a terrible sense of deja vu

    It is obviously I am on a hiding to nothing unless I buy into the “Wessely is a lying bastard” narrative so we might as well leave it there.

    For everyone who is ill at the moment I hope you get some respite from your symptoms from whichever source. All the best

  39. MrsP said,

    Dam made a post and lost it

  40. MrsP said,

    I will just leave these links here:-

    http://www.thetwentyfirstfloor.com/?p=6543

    Wessely himself has replied to criticisms in the comment section of this article in the 21st Floor blog. Another good place to see his comments and not those cherry picked and mangled is his own website

    http://www.simonwessely.com/faq.html

    I find his ideas evidence based and plausible, which does not mean that a purely biological cause may be found for some at present labelled CFS/ME. I would think he might say the same.

  41. RJC said,

    “Neurasthenic remains in the Mental and Behavioural chapter under “other neurotic disorders.”

    “Neurasthenia would readily suffice for ME”.

    One might ask why Wessely talks extensively about ME/CFS in a paper called Functional, Somatic Syndromes. One or Many?

    In 2005 he described CFS specifically as a functional, somatic syndrome.

  42. anon said,

    @MrsP

    In the economics of the PACE trial treatment the paper is very explicit what the hypothesis of what they were testing
    “CBT, delivered by clinical psychologists or nurse therapists, aimed to change behavioural and cognitive factors assumed to be responsible for perpetuating symptoms and disability. GET, delivered by physiotherapists, aimed to return the participant to an appropriate level of physical activity by increasing exercise in a gradual and personalised manner.”

    I would say that the trial was just disfunctional not only have they ignored the published protocol in reporting their results there are serious questions about the acuracy of the way they are measuring the outcomes. It seems really unfortunate that they used such a large amount of public money in doing this and are now trying to carefully control and spin the results.

    Have you tried reading one of Wessely’s papers rather than just his FAQ. I’ve found the ones I’ve read making huge unjustifiable jumps from a piece of evidence to a grand conclusion. Try writing down what statements the evidence shows and what he is saying hence the assumptions made.

    If we are going to go down the line of evidence based medicine then we need to have some formality in how we treat and reason about evidence and uncertainty. If this doesn’t happen we get people writing papers claiming to be evidence based but making unjustifiable inferences.

    But what we really need is good observation and theory rather then aimless random randomised controlled trials. So Fluge and Mella observed that a lymphoma patient with ME lost their ME symptoms when treated for lympoma. Lipkin commented on active B cells in a patient cohort even thought there was no virus. There are other results showing immune system issues and Fluge and Mella have run a small sucessful trial with Rituximab. These things suggest the immune system is the place to look. Theoretical developments in understanding the immune system are being made all the time. Hopefully these observations can be fitted into theories of the immune system and help derive theories of how ME may work whose hyopthesis can be tested.

    In the meantime a larger Rituximab trial is needed as the most positive treatment so far demonstrated. However I believe the MRC has turned this down as the psychiatrists on the panel were not interested.

    For ME we need some really good quality science rather than opinions and badly designed RCT.

  43. Rae T. said,

    What a sad and unfortunate situation! There is so much that can be done with modern medicine and technology; pushing away those that could find a treatment or cure is not going to help the situation. Just looking at the ME and Chronic Fatigue Syndrome statistics is proof that more could be done.

  44. anon said,

    @rae T

    Those who could find a cure are not being pushed away but are struggling to find funding. Some researchers are still pusing on CBT and GET as a cure despite the evidence of failure. The argument should be what are the most promising areas to look at and ensuring that they are followed. There is much research showing immune disfunction yet we still see more CBT and GET trials layering failure on failure.

    The FDA made an important comment in saying that without bio markers it is hard to judge the sucess of treatments. Yet some ‘scientists’ are happy to judge sucess by asking a few random questions, adding up responses as if they had arithmetic meaning and calling this a scale. They also ignore psychological effects such as framing in the way they used the scale as they fail to have good control groups.

    There is also a need to control the cohort. Lipkin et al did a good job of this in their study but many of the psychiatrists studies have weak selection criteria. In general I would argue that each time you add a variable into your model you need to double the data set size.

    There has been too much poor quality science surounding ME the distressing thing is that the establishment has backed that poor quality. When a major trial refuses to publish the results as defined in the trial protocol the establishment says nothing. Infact they give awards to someone on the trial steering comittee who continues to push this trial and the spun results as well as making vast unjustifiable generalisations from the results.

  45. John Maddox Prize – first winners | Monastic Musings Too said,

    [...] ME/CFS: Harassment of Researchers [...]

  46. ME – CFS – Gulf War Syndrome – Professor Simon Wesseley and the media. « The Actwell Journal said,

    [...] ME/CFS: Harassment of Researchers (jdc325.wordpress.com) [...]

  47. I have posted before but will add this said,

    November 27, 2012 at 12:33 pm

    [...] ME/CFS: Harassment of Researchers [...]

    46.ME – CFS – Gulf War Syndrome – Professor Simon Wesseley and the media. « The Actwell Journal said,

    In response to The Actwell Journal

    If you have pastel shades on your walls are fat ,happen to be a girl ,have childlike mannerisms and behaviour, have an absent Father this makes it more likely that it is childhood abuse not ME says Dr Tony Marshall.

    Also the danger signs to watch out for are illegal cuddly toy displays, remote controls and game controllers these are also somehow signs of an ME delusion and possibly childhood abuse according to Dr Tony Marshall .

    Mothers are abusers according to Dr Tony Marshall especially when they help their children sit up in bed or try to walk .I was similarly surprised to find countess of Mar and a doctor listed alongside militants and a vendetta .
    This shows how far science medicine has come in identifying inappropriate colour choices such as pink on bedroom walls or takeing into account the accumulation of teddy bears and games in determining who has ME from those who just have abuse

    if you have ME or are just abused I recommend people drastically DE clutter and strip their walls bare before allowing anyone like Tony Marshal into their home.

  48. Amy said,

    What’s an “illegal cuddly toy display”?

    I’m aware this isn’t central to the debate but just curious…

  49. my answer said,

    i think you should be asking Dr Tony Marshal why he thinks Cuddly toys are somehow wrong here or evidence of abuse. he is in a way treating them as incriminating evidence in the same way that owning a illegal weapon or drugs can get people into trouble .

  50. Amy said,

    @my answer, do you have a link to the piece you are referencing? Thanks.

  51. my answer said,

  52. the UK said,

    Letter from Countess Mar to Professor Simon Wessely

    Lady Mar has already sent the attached 4 page letter to Simon Wessely

    4th December 2012

    Dear Professor Wessely

    I note from recent correspondence arising from the report in the Independent on Sunday on 25 November 2012, that you believe me as guilty of harassing you. Perhaps it is not surprising that I regard this belief with something less than amusement.

    I wonder whether you recall the time when you were just getting your initial research into Gulf War Illnesses off the ground in mid-1998? I had given evidence to the Royal College of Physicians and Royal College of Psychiatrists Inquiry on Low Level Exposure to Organophosphate Sheep Dip which was published in November 1998. Your colleague, Professor Anthony David, was a member of the inquiry. I recall receiving a letter from you both to the effect that you were sorry that I had had reason to criticise your Gulf War research in the course of my evidence when, in fact I had not mentioned Gulf War research. You also asked to meet me. I recall correcting you on the facts and stated that I had no desire to meet you. I then received a number of telephone calls and letters, both to my office and my home, demanding that I meet you. I have to say that I regarded this as harassment at the time, though I did not see the need to contact the police. Eventually I agreed to accept your invitation to lunch at Gordon’s Wine Bar behind Charing Cross Station.

    I brought with me Ms Emily Green, an eminent scientific journalist, with your agreement. I shall never forget being astounded to find that, when we arrived at the appointed time, 12.30 pm, you had arrived early; bought your own lunch, and presented us with a bottle of water. Prior to the meeting you were very firm about the time, as you had patients to see at 2.00 pm. We discussed a number of topics, including whether you knew Elaine Showalter and whether you had ever advised the Department of Social Security on subjects such as ME. Some of your responses we found were economical with the truth to put it mildly. It was very shortly before 3.00 pm that you finally got to the point – you wanted me to help persuade the Gulf War Veterans to complete your questionnaire!

    I think you need to understand that this encounter left a rather enduring and nasty taste in my mouth, not least because I had to buy my own lunch when you had invited me to lunch. Neither was I impressed by your deviousness in response to straightforward questions. This caused me to look more deeply into what you were doing and into your associations, most of which are now public knowledge. This, in part, helps to explain why I have reason to criticise some of your work.

    I have also attended some of your lectures and have read reports of others. I have heard and read the extraordinary way in which you and some of your colleagues have denigrated people with ME and have tried (and to some extent succeeded) to persuade others that people with ME are not really ill at all; they merely have ‘aberrant illness beliefs’. You have deliberately obfuscated the terminology surrounding ME by linking it with chronic fatigue and attempting surreptitiously to reclassify it as a psychological condition under the WHO ICD classifications. In doing this you appear to have totally ignored the first exhortation to doctors – “First do no harm”. Yet when this beleaguered population has reason to look at your work critically you deny what you have said and written and plead persecution and harassment from the very people you purport to be helping. I would have thought that any thinking person would ask themselves why this is happening; would ask the individuals who are clearly angry what is angering them, and try to put things right. You are in an exalted position – a Professor of Psychiatry with all sorts of awards. Why on earth do you need to play the victim?

    My personal experience with organophosphate poisoning taught me that there are members of the medical profession who are not prepared to “listen to the patient for they will probably tell you the diagnosis”. I am fortunate in that I am articulate and determined and I have been put into a position where I can speak for others less fortunate than I am. If that means offering honest criticism of individuals who, I believe, are hurting others who are not in a position to speak for themselves I am prepared to take any brickbats that come my way.

    So much of the friction comes from people not knowing what you think because you are so inconsistent. For example, in your presentation to the full Board Meeting of the DLAAB on 2 November 1993 which was considering those with ME/CFS you said: “Benefits can often make people worse”, yet in your letter to Dr Mansell Aylward at the DSS you wrote: “CFS sufferers should be entitled to the full range of benefits”. Given that, in 1990 you had written: “A number of patients diagnosed as having myalgic encephalomyelitis ……… were examined ……..in many of them, the usual findings of simulated muscle weakness were present” (Recent advances in Clinical Neurology, 1990, pp 85 – 131), I am wondering how a genuine condition can also be simulated and am curious to know what your position is regarding benefits for people with ME.

    I note that you do not hesitate to condemn statements from your critics as “the same old stuff that they have been saying about me for years”. People with ME could be equally justified in their belief that you perpetuate the beliefs that you have long held that ME is a psychosocial behavioural problem and that you have totally failed to embrace the vast body of peer reviewed scientific literature that demonstrates damage to neurological, cardiac, endocrine and other systems in people with ME. I believe it was you who recommended that GPs should not indulge patients with too many investigations. This has meant that people with conditions that could have been treated have been misdiagnosed and neglected.

    I have spoken strongly in defence of people with ME who have been traduced by you and your colleagues who have embraced the psychosocial behavioural model. I am not ashamed of having done so for they have few who will defend them publicly. The scientific evidence is heavily weighted against ME being ‘all in the mind’ so, by deduction it must be the economic argument that prevails, to the disadvantage of the estimated 250,000 people who have ME. have you ever considered the savings to the exchequer and to the insurance industry if people with ME were properly investigated and treated so that they could return to work or education?

    I take no pleasure in asking “bogus” questions and making speeches in the Lords. I would very much sooner your profession got its act together and spent some time studying the real effects of ME on patients and looking for solutions. We all recognise that chronic illness, whatever it may be, presents with psychological aspects. CBT can only be a management tool and GET reportedly does more harm than good for patients with ME/CFS as opposed to chronic fatigue.

    Patients must be able to trust doctors and scientists. You have betrayed this trust. A scientist should be able to accept honest criticism. You have misconstrued criticism and turned it into harassment. You have much to answer for, so it ill behoves you to employ diversionary tactics in an attempt to portray yourself as the injured party.

    I have written this as an open letter because so much of this debate has been in the open. It would be helpful if you would make your position with regard to people with ME/CFS utterly clear. Do you still believe the ME/CFS is “perpetuated by dysfunctional beliefs and coping behaviours” as you wrote in your 2002 CBT Manual for Therapists? If you do, please will you explain why no one got better with your model. If you do not, would it not be sensible for you to withdraw it instead of continuing to make the facts fit your theories as they appear to have been in the PACE statistics where you were in charge of the Clinical Trial Unit.

    I look forward to hearing from you.

    Yours sincerely

    Countess of Mar

  53. the UK said,

  54. MrsP said,

    What a good piece of evidence for abolishing the House of Lords.

  55. nasim marie jafry said,

    No one would endorse threats to scientists but there is much more to this story than is often reported, as others have pointed out. The threats – unpleasant as they are – have been ramped up and ramped up, while the narrative of an extremely ill patient population – with until recently no biomedical research being funded by MRC – is simply drowned out. People with ME have very little platform in the media, which is currently dominated by health editors and journalists who support the Wessely school of thought, that this illness is perpetuated by false illness beliefs, even if the trigger is viral. CBT and graded exercise (GET) are the primary therapies of this school, even although exercise is known to make people with ME worse. This fact is rarely is reported by the enthusiastic media, that over-exertion exacerbates ME, often catastrophically so.

    In the Spectator article that this blog post links to Simon suggests that neurologists in late 80s were very dismissive of patients who ‘thought they had ME’. Simon does not give the whole picture, and it is these half-truths that always fill me with unease. I was diagnosed in early 1984, after more than a year of virally-triggered illness, by consultant neurologist Professor Peter Behan, who himself introduced me to the term myalgic encephalomyelitis. I had never heard it before. So it is somewhat disingenuous of Simon to omit this information. Scotland is not a million miles from London, and Simon is well aware of Prof Behan’s work; the incidence of ME after Coxsackie B4 in west of Scotland in 1980s is well-documented. Prof Behan diagnosed me after ‘a battery of tests including muscle biopsy, EMG, specific antibody titres of Coxsackie, and lymphocyte subset analysis’.

    He pronounced me to have ‘a full house’ of abnormalities.

    I do not recallhim suggesting that I was perpetuating my symptoms with false illness beliefs. He told me I was gravely ill and that sadly there was no cure though hopefully I would improve with time and rest. He also treated me with a plasma exchange and immunosuppression; anti-viral drugs; and Efamol Marine. He gave me hope by providing a much needed diagnosis. His work is described in Dr Melvin Ramsay’s ‘Postviral Fatigue Syndrome’.

    After thirty years of ME, I remain ill, moderate with severe dips. I have done everything in my power to recover, often making myself worse in the process. I cannot stress how dreadful this condition is, especially in the severe phases. I am often stunned by the politics that now surround this illness, I could never have guessed thirty years ago this is where we would be now. We want to be well, we want to have full lives, but that is not going to happen while the landscape is dominated by the biopsychosocial school. People with ME are simply not getting better with these therapies.

    Nasim Marie Jafry, author of ‘The State of Me’

  56. Jack said,

    I have this diagnosis – ME or CFS call it whatever you will – and have had it for 15 years. I really do not care as to the label of preference today.

    The behaviour that led to a variety of researchers and clinicians feeling it necessary to speak out – filled me with disgust. It was wrong, and asking for ‘proof’ as some have is wrong too – not to mention stupid.

    This behaviour has now been widely acknowledged (even including most recently Prof Hooper) and condemned, but there is often a ‘but’ accompanying such statements.

    There is indeed more to the story of clinical interventions afforded to my condition and the rationale alleged to be behind them – however that is absolutely no excuse not to condemn the activities of those few who have taken it upon themselves to act in such an irresponsible and idiotic way.

    Once again the wider ‘community’ is indeed in danger of being tarnished by the same poorly applied brush. It will be harder – not easier – to gain any media representation unless it involves or alludes to this scandal and harder too to get anyone who might change anything to listen.

    That letter in the Independent was not written by Wessely, and neither was it signed by him. That letter was signed by a wide variety of academics that included for instance, Prof Holgate.

    It was he, and his expert group, that changed the direction of research into my condition, after many, many years of the ‘community’ pleading for it and following some interesting science along the way from elsewhere. And guess who is on that expert committee? Why some of the very scientists who have been threatened!

    That letter in the independent acknowledged my condition as ‘serious’ and ‘debilitating’ and in need of ‘better’ and ‘improved’ treatments and research!

    This whole issue has been about unacceptable behaviour against different people still willing to intervene in my condition. It was not all about Wessely or about protesting against the so-called ‘psycho-social’ school.

    If I could get another diagnosis believe me I would.

  57. Angela Kennedy (@AcademicAnge) said,

    @ Jack – one of the most important reasons for asking for substantiation, and clarification (NOT ‘proof’) of allegations of ‘abuse’ or ‘harassment’ is so that innocent advocates like myself (also an academic) can disassociate ourselves from any ACTUAL abuse or harassment that may have been carried out.

    Currently – in all the articles claiming ‘abuse’ and ‘harassment’, the most legitimate courses of action are being claimed as harassment. Surely you can see that it is unreasonable for advocates – including prominent named ones like myself – to be wrongly accused of harassment?

  58. Dr Tony Marshall said,

    I am amazed by the discordance that has arisen over ME. The need for therapies that work is in my mind the most important thing. To determine what works requires research and researchers.

    The development of Translational Medicine Departments, that co-ordinate research and fast track effective therapies for conditions that do not have them is something to be welcomed.

    I do hope that militancy does no further harm to those that have ME and those who seek to help them.

  59. Justin Reilly, esq. said,

    I must agree with all those who have commented that Prof. Wessely has brought the condemnation on himself with his decades-long war on ME science and persecution of millions of disabled worldwide. Please do your due diligence into the merit of Prof. Wessely’s “work” before announcing that any alleged threats to him are underserved. Thank you for your consideration.

    Sincerely,
    Justin Reilly, esq.

  60. ChrisP said,

    Justin, it is strange to meet someone who thinks Simon Wessely deserves to receive death threats. I can’t even begin to comprehend how a mind would work to come up with such a notion.

    Elsewhere on the internet, I have been pilloried by those who claim that nobody has been making threats against Wessely and that all the talk of threats is posturing for the media by Wessely. When I have suggested there are people out there who approve of the threats, I have been told I need to name names. Now I will be able to produce a name.

  61. Jack said,

    It was NOT all about Wessely. This ‘harassment’ – call it what you will Angela to (in my opinion) hide behind what has been widely acknowledged as having taken place – was wrong. Period.

    Whatever other ‘issues’ you feel need to be addressed can only be accomplished (assuming for one moment they have any validity and are not based solely on one’s own biased interpretation), through engagement with all disciplines.

    The picture painted by those who are effectively defending these actions is not one shared by me or all professionals in actual clinical practice delivering these management strategies.

    Research from the MRC HAS changed direction. The emphasis HAS been altered towards the so-termed ‘biomedical’ preference.

    And yet, there are some on the internet who STILL criticised the projects that were sponsored even before the projects had started. And I am not talking about expressions of ‘I’d rather they’d gone in this direction…’ or legitimate questions relating to understanding; I am talking about expressions of distinct distaste.

    There were still claims being made that the research was not properly recognising the ‘real ME’ implying the MRC were paying only ‘lip service’. The work that went on behind the scenes to ensure even funding was made available for this single disease was in and of itself a mountain to climb.

    There should have been unanimous praise for that work not admonition. I remain to be convinced that even known ‘advocates’ have a clue about what it is they claim to be trying to achieve or how to effectively achieve it.

    Pursuing ‘scandal’ and trying and failing to make ME more than what it is – has not and will not work. Engagement and hard work takes time but it is bearing fruit and will continue to do so – unless idiots continue with the kind of thing that has occupied the press and internet forums for the last 12 months or more.

    Jack (aka Firestormm aka Russell J Fleming).

  62. Angela Kennedy said,

    You’ve sidestepped my point Jack. Those allegations of harassment are vague at best, and actively include legitimate advocacy measures by innocent people like myself. Forget how you think ME advocacy should proceed (a massive issue for the ME community not directly relevant to this blog and its post), this is about FALSE allegations of harassment against innocent people, as well as vague allegations which now colloquially include virtually all of the ME community and its supporters.

    Also – unimpressed by your treatment of me over on Bad Science. I am a member of an academic community, whether you like it or not, and a social sciences academic is still an academic, whether you like it or not. The hypocrisy of people who admonish ME sufferers or their supporters for alleged bad behaviour, then engage in active ad hominem, is stark. How can a reasonable, mature debate be engaged in when this sort of thing is going – not to mention the violent misogynistic imagery people were treated to yesterday over on Bad Science?

  63. Jack said,

    Angela if they are ‘vague at best’ how do you know they include you? Is that what this is all really about – that you and others actually think they are talking about your own activities?

    They are deliberately vague because nobody will say – rightly – who it was that made them and in what quantity. Oh I’m sure that the quotes read out on air from some emails will be recognised by the people who made them – but how can you be sure they are talking about you or anyone else and what they have been up to?

    Oh for gods sake Angela. I made an inaugural post on Bad Science yesterday. And yes, each and every time you are engaged with you end up lecturing. I am sorry. That’s my opinion. Yours of me has been similarly reported across your own domains.

    It seems my actions in regard to this latest round of ‘badger baiting’ have resulted in at least one idiot on IiME asking me to leave their Facebook page this morning. Which I have now done.

    I agree, it is a great shame this lack of a willingness to engage respectfully, but it can and most definitely does swing both ways.

    Things are changing Angela and for the better. I truly believe that. It has taken a very long time – and I have lived through some of it. I do not want to see this positive momentum lost by history lessons and vindictive pursuits based on misrepresentation in whole or in part.

    I do NOT think that prize should have gone where it did. I’d rather it had gone to someone else. But it wasn’t my call.

  64. Angela Kennedy said,

    @ Jack /Firestormm/Russell the allegations of ‘death threats’ are vague at best, as I have shown. The allegations that complaints to official agencies, FOI requests, even speaking to a newspaper are ‘harassment’ are actually very clear, much more clear than the vague examples of what would actually be deemed ‘harassment’ under British law! As someone who is known for publicly detailing her legitimate communications in those respects, and who has been falsely accused of personally harassing Professor Wessely, a false claim that has never been retracted, of course I am legitimately concerned at how legitimate activities are being wrongly constructed as ‘harassment’.

    Bad Science is routinely hostile to certain people – not joky, not playful, hostile. I’m a regular victim of that on there. Your comment was not joking or playful. You have intimated I am mentally unstable elsewhere also. It’s sheer venal ad hominem and I would rather you address my substantive points, but obviously I cannot make you

    You can call my countering your points lecturing if you like – but the same can be said of you. So we can agree here that anyone who tries to make any relevant comments can be accused of lecturing perhaps? No – that would be silly. Far better to refrain from trying to score points by attacking people for daring to make comments in the first place.

    Yes things are changing – those relentlessly attacking ME sufferers and their supporters have finally been seen to have over-egged the pudding/jumped the shark etc., and reasonable people are beginning to understand that, for various reasons. That is a major achievement I celebrate.

  65. Amy said,

    Angela, just to place you, are you one of the founders of the One Click group? I always get confused between you and a campaigner called Suzy Chapman.

  66. Angela Kennedy said,

    @ Amy, I was one of the founders of the One Click group. I left in 2006 due to family needs, and since then their trajectory of campaigning is completely different to my own in advocacy and academic research. Suzy Chapman is another advocate. She is not a member of the One Click Group.

  67. Justin Reilly, esq. said,

    @ChrisP, I meant that when you intentionally cause serious harm to millions of disabled for decades, you should expect and you deserve bad things to happen to you, such as receiving death threats. I don’t know if he actually has gotten any, he has a history of distorting and lying about the facts, so it would not be out of character for him to be lying here. But I would not be surprised if he got some, again, considering all his abuse of the disabled.

    I discourage threats of physical harm to Wessely etc, but I do think he deserved them if they occurred.

    With all the concern for the feelings of these insurance lobbyists, trained as psychiatrists and posing as scientists, what about the welfare of the millions of ME patients he has harmed.

    Can we please get some sympathy, attention, actual science and help?

  68. JW said,

    Hi, it’s always difficult to sort out what’s going on when starting in the middle. But thanks for noticing us. Truly. :)

    While it’s true that it’s inappropriate to, for example, make death threats, this is not typical behaviour of ME patients. These incidents, while regrettable, should not be used to sterotype people with ME/CFS.

    Nor should reasonable criticisms of CFS/ME research be dismissed simply because someone else with the same disease label has said something wrong.

    One problem is that bad behavior is being conflated with reasonable criticisms, and they are all being swept out together. The fact is that many reasonable criticisms of the Professor’s work do exist, and many patients are saying so politely and in appropriate channels (for example, writing to journal articles to make a technical point about the methods in a particular paper, or filing a FOI request to ask for data from the protocol of a paper which was published almost 2 years ago). However, the response to appropriate comments like these is to take to the airwaves and do a radio interview about harassment.

    The patients, on the other hand, very rarely get a platform to speak about the very real, very serious harassment which we face. While I don’t discount that Wessely and McClure and some of their colleagues may get some hate mail, there are many thousands of us who face harassment and prejudice daily. And yes, it’s life and death for us. And we have no platform, no funding, no voice. So yes, there is a power imbalance, and the power is not on the patients’ side.

    The other missed story is the biomedical researchers. A few have been chased out of their jobs by their institutions for attending ME/CFS conferences, daring to believe that ME/CFS is a biomedical disease or has a biomedical component, or possibly for wanting to use a stricter inclusion criteria (there are no less than 4 in active use: some are not clearly different from idiopathic chronic fatigue). Many more have been choked out of ME/CFS research by a great lack of funding for biomedical avenues of research.

    Regarding the views of Wessely et al., note that a ‘trigger’ is not the same as a ‘perpetuating factor’ – if someone said that MS or cancer, for example, was ‘triggered’ perhaps by a biological factor but was maintained mostly by behavioural/ emotional/ social / thought factors, I don’t imagine those patients would be impressed, either. Especially when it was repeatedly suggested they should be rehabilitated with talk therapy and exercise, when they know both from experience and from a careful examination of the literature that this doesn’t work.

    A summary of the views of Prof. Wessely (and those of his colleagues of similar mind) versus those scientists putting greater weight to the biological aspects can be found in this review article:

    http://www.ncbi.nlm.nih.gov/pu

    Whatever Wessely and his closest colleagues and other ideologically like-minded persons such as Peter White, Michael Sharpe, Trudy Chalder, Rona Moss-Morris, James Jones, and the late William Reeves mean to convey, the incorrect message doctors and the public are unfortunately getting is that ME/CFS would be a trivial condition and the patients would be prone to exaggeration/hysteria and basically a waste of time and space. Very sad, but that is what patients face every day. Looking at the articles by these authors and the bulk of the news articles, I can certainly understand why that is the message is which is getting across. On the other hand, if one looks at journal articles by Drs. Jose Montoya, Mary Ann Fletcher, Nancy Klimas, Jonathan Kerr, John Chia, Anthony Komaroff, Julia Newton, Kathy & Alan Light, Ekua Brenu, F Duffy, Leonard Jason, Bruce Carruthers, Gwen Kennedy, Mark VanNess, and so on, and newspaper articles by Llewellyn King and David Tuller, one will find a much different story: ME/CFS is a serious, very debilitating, neurological and immune disease.

    To understand our objections to those therapies, start here:

    and here:

    http://www.iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/tabid/501/Default.aspx

    shortlink: http://bit.ly/vZxv5L

    thanks,
    Janelle

  69. Dr Tony Marshall said,

    I have read the abstract of the paper and am tackling the paper itself. I am afraid there are no effective treatments of any sorts that do not on occasion cause harm. Aspirin causes harm, also this article in the Guardian shows how the nocebo effect can be very harmful in some individuals..

    http://www.guardian.co.uk/science/2011/nov/13/nocebo-pain-wellcome-trust-prize

  70. nasim marie jafry said,

    Hi Dr Tony, The harm caused by graded exercise and/or pushing oneself is often catastrophic. Many patients have become worse as a result, including myself. The only factors we know for sure that may help us are absolute rest and time. Anything else is experimental. Indeed when you are in a severe phase, rest is all you can do since having a shower is a major task, and some people with ME are so severely disabled they are unable to wash themselves and attend to basic needs.

    As I said above it astonishes me that 30 years after my own diagnosis there is more obfuscation and miseducation about this illness than ever. Is it not reasonable to expect that thirty years on there would be more awareness and understanding of *any* illness? Instead of which we have the opposite. I attribute this to those biopsychosocial researchers who have doggedly held onto their beliefs since the early nineties in spite of it being obvious their therapies are not working.

    I heartily suggest you read ‘Postviral Fatigue Syndrome – The Saga of Royal Free Disease’ by the late Dr Melvin Ramsay, one of the founders of the ME Association in the 80s. Professor Behan, the neurologist who diagnosed me in 1984, did muscle biopsies decades later on some of the original Royal Free patients who were still experiencing profound fatigue, and found abnormalities.These patients had been originally dismissed by psychiatrists as having hysteria. May I also suggest you read my novel ‘The State of Me’ (HarperCollins). It is a fictionalised account of my own experience. It will educate you about ME from a patient’s point of view, a point of view that has been all too suppressed in the UK. Thank you.

  71. Dr Tony Marshall said,

    Sorry I am not going to buy your book. I no longer have the capacity to read due to the problems I have dealing with chronic pain and the effects of the medication I take to control it. I see no point in trying to post reasonable comment here.

  72. JW said,

    thank you, Dr. Tony, for reading the harms paper.

    Aspirin is generally safe for most people in most cases. And yet Aspirin is contraindicated in children with flulike symptoms because of the risk of Reye’s syndrome. Because it’s a pharmacological therapy, there is a reporting system for harms and we know this.

    However there isn’t a reporting system for harms for non-pharmacological therapies like CBT and GET. Patient surveys is about the best we can do. And the surveys say fully half of patients with ME/CFS are made worse by GET–sometimes seriously worse and sometimes long-term. (And the possibility of improvement is not large: we can find either no clinically relevant improvement [in the averages] or no statistically significant improvement [there do seem to be a few people who improve considerably during the programme, but not enough of them that we can prove this is from the therapy in question].) So just like aspirin in children, people with an ME or CFS diagnosis should generally not be prescribed a graded exercise programme (including those incorporated in CBT programmes).

  73. JW said,

    also, I’m sorry you are not well. I hope you feel better soon!

  74. jdc325 said,

    @JW,

    While it’s true that it’s inappropriate to, for example, make death threats, this is not typical behaviour of ME patients. These incidents, while regrettable, should not be used to sterotype people with ME/CFS.

    I quite agree. As I wrote in my blog post, Wessely points out that the extremists are a minority that bear little resemblance to the patients he sees.

  75. Angela Kennedy said,

    But that is not quite accurate jdc325. Here, for example, it is claimed that Wessely is “Simon Wessely, a psychiatrist at King’s College London [who] is reviled by many with CFS”. It is in this article that Wessely, obviously interviewed and providing the information, claims this: “This will convince another large group of decent scientists to say: oh no, I would rather go find the gene for homosexuality or do work on images of the prophet Mohammed than do this.”

    Then there is the radio programme where Tom Fielden interviews Wessely in July 2011, where first Fielden says this: “This is a very alarming campaign really of harassmentsomething a small group of academics working on chronic fatigue syndrome or ME…and it has included abuse and intimidation, death threats vilification on internet websites and also a series of official complaints alleging both personal and professional misconduct to universities ethics oversight boards and the General Medical Council but really at its heart it seems to be an objection by some activists to the association of Chronic Fatigue Syndrome with mental illness its characterisation as a psychiatric condition.”

    Wessely himself says this directly after: “Its a direct intimidation letters, emails, occasional phone calls and threats; but more often indirect intimidation through my employer through the General Medical Council and its something that Im always aware of with everything I do that there are people watching who try and make life difficult.”

    These are just two examples. There are more. There are LOADS of people in the ME community who have written to the GMC, to employers, and importantly, to ethics boards, for example, about Ester Crawley’s ‘Lightening Process’ trial on children (big woo factor should be raising alarm bells by the way!) not just about problems with Wessely’s actions or claims, but those of many proponents of psychogenic explanations for ME/CFS.

    And, as is clear, I wrote to Wessely’s employers for a good reason (about a false claim of ‘harassment’), and complained about the PACE trial (which Wessely is involved with) for very good reasons, neither of which can remotely considered ‘harassment’.

    This is the problem – the claims around ACTUAL harassment as say, defined under British law, are so vague, the numbers so vague, the descriptions of people making legitimate objections to psychogenic explanations for their illness changing from ‘extremists’ to ‘harassers’ etc. etc. while legitimate public actions are treated as harassment, it becomes a case that many ME sufferers or supporters of the community are treated as a possible ‘harasser’. At one point even FOI’s are included as ‘harassment’ (in the Nigel Hawkes article in the BMJ). So no, Wessely is not clearly saying this alleged ‘harassment’ is from a minority as such.

    Wessely at the very least needs to clarify numbers and actions when he talks about ‘abuse’ or ‘harassment’ to allow those of us who are acting legitimately to be disassociated with those unsafe claims. And yes, that includes clarifying that he has never been harassed by me, because he has not! Expressing objections to Wessely’s beliefs about this illness does not constitute harassment.

  76. Nasim Marie Jafry (@velogubbed) said,

    That is a shame, Dr Tony, that your own health means you cannot read the book, it informs about ME in a non-didactic way for those curious to learn more. I deliberately used the platform of fiction, hoping to engage a wide range of readers. Also, the novel is widely available in libraries, I was not suggesting you buy it! And I agree, it can seem pointless leaving reasonable comments on threads like this – that is how people with my illness often feel, our attempts to educate are rebuffed. The whole situation truly confounds me. We will get there in the end though, science is on our side.

  77. Angela Kennedy said,

  78. jdc325 said,

    @Angela,

    My comment about Wessely’s views was based on something he wrote. Your comments are based on things that other people have written. I have to say, I don’t find your example convincing. Ewen Callaway might think Wessely “is reviled by many with CFS” but I can’t see anything that you’ve posted that shows that Wessely himself thinks that. If I want to ascribe a position to someone, I tend to find it is better to base that position on what that person has said and done rather than what a third party has said and done.

    In the absence of reliable evidence to the contrary, I think I will take Wessely at his word when he says that the extremists are a minority that bear little resemblance to the patients he sees.

  79. Angela Kennedy said,

    JDC, firstly there are two examples I have given. The second example is Wessely being interviewed on radio (transcribed by ‘Jack’ here who put it on the Phoenix Rising forum), so I’d say that’s pretty much from the horse’s mouth. I’m presuming Wessely has some sort of fact check on the articles he gives quotes and tells his narrative to.

    The first has some amazing hyperbolic statement made by him directly, by any reasonable standard, but that statement was not made in irony. He also says things like he’s ‘used’ to the ‘abuse’.

    I’m not sure what you think you have to be ‘convinced’ of frankly. It’s clear that Wessely counts writing complaints about him to be harassment – which by his logic, makes Stuart Jones a harasser of Sarah Myhill. See, therefore, how problematic this situation is? I would hope you would take an equal opportunity tentativeness and due agnosticism on the whole issue. Unfortunately, your blog here does not quite do that. You take the allegations at face value. Some people claim they are harassed, you accept it. You use the word ‘extremist’ without any agnosticism, without any critically analytical care as to who is being deemed ‘extremist’ or what is being deemed ‘harassment’, and what that might mean for those of us innocent of harassment, but who have dared critique or express concerns about Wessely’s beliefs about ME through public or official channels.

    Are you convinced I have not harassed Simon Wessely, based on my testament here? The evidence available indicates I am innocent of such an allegation, and indeed I am. In which case, who is the person who said I ‘personally harassed him’? Wessely himself, or the person who claimed this – a wikipedia administrator who is well known to people in the skeptic movement?

    Do you not wonder why a community of patients and their supporters are so concerned about what Wessely claims? You get told Wessely or other doctor’s BELIEFS about those concerns. Do you accept them at face value? Do you accept patient or supporter testimony at face value? Or do you think everything they say is suspect? Why? Is that really the critically analytical, scientific way to proceed?

  80. jdc325 said,

    @Angela,

    As far as I can see, your example of the radio show transcript says nothing about how many people are involved in what has been described as harassment. It does not contradict the quote I have from Wessely’s article. Your first example did, but it came from Ewen Callaway rather than Wessely.

    “It’s clear that Wessely counts writing complaints about him to be harassment…”
    In my post I focussed on things such as reports of stalking, death threats, and hate mail. I did not refer to complaints regarding Wessely or to freedom of information requests (from memory, this is something else that some have bracketed with other behaviours as harassment). I don’t think that FoI requests or complaints necessarily constitute harassment. If a number of illegitimate complaints or vexatious requests were made, that would be different but I have no knowledge of the nature of either the complaints or the freedom of information requests so I have refrained from commenting on them or coming to any conclusions.

    “You take the allegations at face value. Some people claim they are harassed, you accept it.”
    I don’t dispute the claim that people have been harassed, no. From what I’ve seen, it is certainly plausible that this is the case (given the defence of the harassment in various places, it is clear that some people at least consider it to be acceptable, for one thing).

    There’s also a screenshot that I have seen that apparently comes from the BMJ (the citation I’ve been given is BMJ 2011;342:d3780). Now, to me, sending someone a message that refers to them as “a despicable piece of human shit” and includes lyrics about wishing someone dead would be an example of “hate mail” and “harassment”.

    So, yes, I accept that there has been harassment. There are other things that I have accepted without question. In your latest comment, you refer to a claim you have previously posted that ‘a wikipedia administrator’ had told you that Wessely had accused you of harassment. I found that plausible and accepted it at face value. You have also claimed that you have never harassed Wessely. I have not questioned this claim.

    “You use the word ‘extremist’ without any agnosticism, without any critically analytical care as to who is being deemed ‘extremist’ or what is being deemed ‘harassment’”
    As I say above, I have focussed on things like stalking, death threats and hate mail – that is the kind of behaviour I consider to be extremist.

    “Are you convinced I have not harassed Simon Wessely, based on my testament here?”
    You’ve said more than once that you have not harassed him. As I point out above, I have not questioned this claim. If you want me to stop taking things at face value and to assume bad faith, perhaps you would like me to question your assertions? Frankly, I was minded not to. They aren’t implausible and I didn’t want to come across as doubting your word. If you don’t think that any actions you have taken have been harassing, then I am willing to believe you. If you want me to accept that you have never set out to harass Wessely, then I am willing to believe you. I don’t think I have ever accused you of anything like that or raised doubts about your testimony.

    “Do you not wonder why a community of patients and their supporters are so concerned about what Wessely claims?”
    Yes I do. At the moment, given the examples I’ve seen of the awful things I’m often told Wessely has said and done, I’m minded to suggest that a large factor in the anger and frustration that has been directed at Wessely has been the misrepresentation of his position, the inaccurate quoting of what he has said, and the presentation of the views of others as being the views of Wessely.

  81. Angela Kennedy said,

    @ JDC, ok, we may be getting somewhere.

    So you accept that writing letters of complaint to official channels about a doctor’s practice (including claims they make) is not harassment? You accept that my writing to Wessely’s employer about a false claim of harassment that he is sadly implicated in does not constitute harassment? That’s the rational response, so great. The problem is though – that you saying that is one thing, but you are not the only person reading about all the alleged ‘harassment’ by the ‘mean ME community’, and there are many who have been taken in by the wrongful conflation by Wessely and others (it’s not just him) of legitimate objections, expressed in public and official channels, with the vague and unsafe public allegations of death threats’ (remember my example above?). And no- thank you – I don’t need you to question my assertions about my innocence. I don’t know why you would think that.

    What happened to me presents a major problem to this ‘harassment’ meme doing the rounds. While you personally have not accused me of ‘anything like that or raised doubts about your testimony’ others have. I had to make the statement because I had been falsely accused and Professor Wessely is -sadly- implicated in that libel. At the very least, it was and is highly irresponsible of him not to have made it clear from the start that I have not harassed him, especially as he is falsely deeming – himself – letters of complaints and writing to his employers as harassment. When I saw him doing that last summer – I immediately could see how I was being wrongly implicated in those allegations. It doesn’t help that has not set out to correct all the -by your reasoning- misquoting of his beliefs by all the journalists he has given interviews to, which is what you are arguing. Another example, just one of many, of him being allegedly ‘misquoted by journalists’ is this quote here:

    http://medicalxpress.com/news/2011-07-british-chronic-fatigue-scientists-death.html

    “It’s direct intimidation in the sense of letters, emails, occasional phone calls and threats,” Wessely said, adding that those behind the abuse were also making official complaints to British medical bodies.”

    So are you saying that you believe that Wessely is being massively misquoted by all the journalists he has spoken to, yet, knowing that this is leading to prejudicial treatment of all those many advocates who write to employers or ethics committees or the GMC, he is happy to remain massively misquoted and misrepresented and is making no attempt to correct such misquoting?

    As regards your belief that Wessely has been misrepresented to the ME community, as I showed briefly before the onslaught over on Bad Science, the notion Wessely is being misrepresented by advocates is highly problematic at best. For one thing, it seems to be based on a misplaced outrage that WHOLE PAPERS or paragraphs are not being included in quotes! As you would I hope know – it’s impossible to include whole texts in any deliberations, otherwise academic papers and books would be the size of encyclopedias. There seems to be this mistaken belief that Wessely is being widely misrepresented, but if you look at the copious amount he AND OTHERS have written – they are not being misrepresented, at least not by many. I have done copious research over eleven years of what proponents of psychogenic explanations HAVE been saying about ME patients (or other patients given psychogenic explanations): There is very little misrepresentation when the examples are looked at in their entirety. There is also the issue of people such as but not limited to Wessely claiming different positions for different audiences (there are a few examples of that), to confuse things even more for the ‘onlooker’, which I am presuming you see yourself as (I’m presuming you don’t have any specific stake in this whole issue and would be honest if you did).

    As someone who is only interested in critiquing unsound psychogenic explanations of physical illness, I am actually concerned that yes there is an over-focus on Wessely and his claims. On the other hand he is a highly prolific proponent of such who has a massive part in the history of how this illness and its sufferers have been (mis)treated, especially in the UK. I am concerned that he seems to feel he should escape being critiqued for actions he has taken and claims he makes, which would make him above other academics or doctors! He and others have also massively misrepresented why ME sufferers and their supporters object to his claims and actions. I am also concerned that you appear to believe those objections are because ME sufferers are somehow being ‘hoodwinked’. That is a completely inaccurate reading of what has been happening, and if that is your position then I believe you are writing in ignorance (that’s not meant as an insult). I set out to make a reasonable, measured argument in my book about what the problems of psychogenic explanations are, and there is copious evidence there. I think if people feel strongly enough to be making public declarations about the ME community, as you have here, the least they could do is read my book to ascertain whether their beliefs are sound – or based on incomplete evidence. I can keep giving example after example of evidence as to why your belief expressed here about what is driving ME community’s ‘problems with Wessely’ is unsound and certainly incomplete – but I could be here for years, and it would clog up your blog. This matter (in terms of reasonable understanding of the whole situation) will not be settled by a few quotes.

  82. Link said,

    Simon Wessely is justifiably criticised for not using the scientific mode of investigation.

    The recent exchange of letters between Simon Wessely and the Countess of Mar have been made public clearly on the request of both Wessely and Mar. It not known why both parties would do such a thing and for what purpose as it does nothing to help patients.

    After the failure of Peter Whites PACE trial, which showed no clinical benefit using CBT and GET, the NHS is funding another Peter White GET study. This however is not addressed in any letter from the Countess of Mar or Simon Wessely. Instead Mar thanks White. There is also no mention that the entire group known as the Wessely school do not use the scientific mode of investigation or that the Government are embracing this none science. Something which surely is vital if we are to expect any progress in developing even one effective treatment for the neurological disease ME.

  83. Angela Kennedy said,

    Interestingly, that apology from Peter White to Mar appears to be about this letter:

    http://www.independent.co.uk/voices/letters/ios-letters-emails–online-postings-2-december-2012-8373777.html

    “However, researchers in the field have been the target of a campaign to undermine their work and professional credibility. This harassment risks undermining research in the field, preventing the development of new treatments and discouraging specialist clinicians from entering the field. We fear that this may have resulted in patients not receiving the best treatments or care – staying ill for longer and not being able to live their life to its full potential.

    So it is with sadness that we read in The Independent on Sunday reports of false allegations made against Simon Wessely – one of the few UK clinicians with a specialist interest in treating CFS/ME and someone who has done pioneering research in the field.

    Ironically, it was because of accusations like this that Professor Wessely received the award in the first place.”

    So here we have another case where Wessely has not directly said something. However this is no journo allegedly misquoting, but the sincere beliefs of 25 colleagues of Wessely, who believe they have the right to accuse the people, quoted in the Independent article that this letter responds to, of ‘harassment’ and ‘false allegations’, and claim Wessely received the Maddox Prize because of ‘accusations like this’. It is therefore clear that daring to critique Wessely is being treated as ‘harassment’. Where is that coming from? Is it really feasible to treat Wessely as a complete innocent in that misrepresentation, someone who is being misunderstood constantly: by the ME community, journalists, and even his own colleagues?

  84. Angela Kennedy said,

    Actually a slight correction – that is 27 colleagues by my count.

  85. Andysnat said,

    For the record, Angelas complaints to Wessely’s managers were harassment, no question. You can’t get away with that so lightly.

  86. justinreilly said,

    ??? How were they harassment, for Christ’s sake? Especially in contrast to the actions of Wessely?

    Sounds like you have been duped by Wessely’s latest orchestrated PR campaign against ME patients.

  87. justinreilly said,

    Angela Kennedy is one of the top authority’s on the Wessely school’s anti-science crusade, so it would be nice if you well considered her comments.

  88. Andysnat said,

    Angela has been refusing to provide any evidence to support her claims about Wessely for the last few days. Now she has run away. It looks like the House of Cards is about to fall down.

    Writing to somebody’s manager is ipso factum harassment – you cannot escape that. She did it.

  89. Angela Kennedy said,

    Andysnat’s comments here show how less knowledgeable people can so easily believe defamatory comments about people in this community and their supporters. At the very best, he is exemplary of how Wessely has been irresponsible in not clarifying what exactly he means by ‘harassment’. At worst, he is exemplary of the high level of irrational hatred that has been generated by the misrepresentation of legitimate actions of disabled people and their supporters as ‘harassment’. Andysnat is so emotionally invested in his beliefs, he is prepared to defame someone, as he has done to me here.

  90. Angela Kennedy said,

    Andy, I am coming to Bad Science is due course to answer any reasonable questions and attempts at rational debate that might be there, nestling in that thread somewhere. I have just not had the physical time to engage with what had rapidly become something akin to a troupe of cocaine-addled baboons wildly throwing poo.

  91. Andysnat said,

    Writing to somebody’s manager is ipso factum harassment – you cannot escape that.

  92. Andysnat said,

    Angels, just in case, I have left you a reasonable question on the Bad Science forum. We are all very keen to get an answer.

  93. Angela Kennedy said,

    Sigh. Andysnat, by your logic anyone who has had any cause to write to someone’s manager is ‘ipso factum’ ‘harassing. This would mean patients complaining about poor care, or someone complaining about bad service at a restaurant or sexually harassed by a mini-cab driver, would be ‘ipso factum’ ‘harassing. I think you need to go and educate yourself about how harassment law is applied in the UK as a matter of urgency, for your own reputation as much as anything else.

  94. Angela Kennedy said,

    Andysnat – your idea of ‘reasonable’ is not that of the dictionary.

  95. joe kane said,

    I love the irony that a member of the online group Bad Science Forum, Stuart Jonas aka “Jonas”, has actually been found guilty by their own professional regulatory body of professional misconduct in the harassment and abuse of an actual medical researcher and doctor, Dr Sarah Myhill, whose career they almost destroyed. Also implicated in the abuse on BSF was the suicide of a patient. Just imagine the furore on BSF if this was an ME patient or advocate guilty of this?
    ‘Deluded quack’ jibe nearly ruined doctor’s career, Daily Telegraph, 21 December 2011

    http://www.meassociation.org.uk/?p=9879

    The irony being that no bona fide ME forum I know of has had any of its members formerly disciplined or subjected to police investigation and neither do they harass outside groups and forums.

    The recent letter in the Independent on Sunday from Wessely’s colleagues should definitively settle the matter as to what the Wessely school of disability denial consider harassment – a balanced piece of journalism in one of the UK’s leading mainstream newspapers. If that is harassment then we are all guilty of this crime, including this blog, for allowing views and evidence which are not pro-Wessely and don’t just parrot his propaganda about being misquoted etc.

    Anonymous Andysnat’s uninformed claims about Angela Kennedy also proves that anyone who dares questions Wessely claims of harassment is taken as a another form of harassment. Again, there is no proof that Wessely was being harassed, and when Wessely and his employers were asked to substantiate their claims they refused to do so. Now this perfectly reasonable attempt by someone to clear their name is being defined as more harassment.

    As always, these “vexatious” claims of harassment by the Wessely school always run into the sand for lack of evidence, or are revealed as an attack on the freedoms and forms normally found in a liberal democracy. Maybe Dr Myhill shouldn’t have pursued her case in order to clear her name of the charges alleged by someone on BSF using online anonymity to cloak their vile behaviour . It’s good to see the anonymous Andysnat keeping up this proud tradition that the victims of his cult group shouldn’t be allowed access to justice for fear they’ll attract more of the same abuse.

  96. Amy said,

    @joe kane the Bad Science Forum is an online FORUM where individuals post different opinions and debate things, just as is being done here. It is not a “group” in the sense you imply.

    I have posted on Bad Science. This does not mean I agree with everything posted there. Angela has posted on Bad Science. Does that make her part of this “group” you refer to?

  97. Angela Kennedy said,

    @ Amy – the problem is there is a groupthink on the ME/CFS threads there that mean anyone who doesn’t toe a certain line, or conflicts with a certain way of looking at things, is just subjected to relentless ad hominem (yes it’s a common logical fallacy – terribly overused, where people attack the person rather than address their points. I say that not to patronise – but because some people seem to think there is no such thing on there!). Sadly there are very few other posters from there willing to stand up and say when this is happening, probably because they fear the same thing being done to them. I’m currently undergoing that over there, have been since Saturday, although I’ve been insulted there a number of times before and a couple of snide comments had been made prior to that. My academic credentials have been attacked over there, false accusations against me from 2005 pulled out again etc.all of which is pretty shocking to witness. I physically could not manage to answer the large amount of hostile posts there, so I’ve come away until I can. Why so much hostility from ‘innocent bystanders’ about a subject towards certain people?

    It wouldn’t matter so much – except this group sees itself as an arbiter of ‘good science’ and rationality a la Ben Goldacre, whose site it is. So to see people resort to unreasonable behaviour in order to prevent reasonable discussion is unbelievably demoralising. There is this social cohesion in the BS forums that is not a good thing, at least on the ME/CFS threads. The thing is – it does make other posters look like ‘oiks’, especially when one of their so-called members sustains relentless attack from a mob and the moderators don’t step in, or take part in the attacks.

  98. Andysnat said,

    There have been no relentless attacks on you Angela, stop making things up, you can’t get away with it any more.

  99. joe kane said,

    So how do you like it then Amy, being subjected to the same propaganda technique as the victims of the disablist abuse on BSF?
    If you’re identifying yourself with this online cult then you must be guilty of harassing medical scientists, doctors and driving patients to suicide. If it’s good enough for the ME online community then it’s good enough for Ben Goldacre’s cult of personality online group too, especially as there is actual evidence to prove the truth about BSF harassment.

    Nobody on BSF is calling out andysnat, who appears to be an administrator, for his smearing Invest in ME as a haters group, and no-one is asking why he is posting updates on BSF about his activities on the Support Dr Sarah Myhill Facebook group, which don’t seem to be appreciated by the disabled patients and their advocates on that group.

    If you identify yourself with BSF then why aren’t you, as Angela Kennedy is doing, standing up on it against what is basically disablist hate speech and abusive disablist online behaviour?

  100. Amy said,

    @Angela, I do agree with some of what you’re saying, and definitely see where you’re coming from. I am interested in Bad Science because as someone with ME I have wasted money and had my health made worse by alternative medicine, including Dr Myhill, and things which could be described as scams.

    I find it hard to engage often I.e. post on the ME/CFS threads, partly because I do fear getting shouted down, and genuinely don’t have the capacity to engage in long debates, but feel that this would be derided as a cop-out on the forum. However, when I have posted – for instance most recently to explain why I, as someone with ME, do not stigmatise mental illness, or fear admitting to it (an argument often used) but that I have tried behavioural approaches and they just haven’t worked, and I just want to see treatments which work, my posts have been well received (you will see a post on these subjects earlier on in the thread you have been posting on).

    @joe kane I do not take at all kindly to being told “If you’re identifying yourself with this online cult then you must be guilty of harassing medical scientists, doctors and driving patients to suicide.” FYI I have very severe ME, am bedbound, often can’t even feed myself, and can barely move. You should be ashamed to suggest such ridiculous things. I do not identify with “this cult” because a) it is not a cult and b) as I already explained, I have simply posted on an online forum. This does not make me part of a movement, or group. It does not mean that I agree with every word uttered on the forum. I believe in rational, open-minded debate, which is often most usefully had with those who may be sceptical about my illness, or at least about the best way of approaching it. Your comments to me suggest that you are not capable of this. As I have already said, my ability to lie here and tap out comments on my phone is very limited, so excuse me if I don’t waste any more energy engaging with you any further. (Joe, not Angela.)

  101. Amy said,

    @Angela, I should add that I haven’t looked at BS today, so things might have changed, but although I can see why you felt bombarded from all sides the other day, to be fair, you weren’t answering a question which was bring put to you, so I am kind of on the fence.

  102. joe kane said,

    Sorry Amy but you have defended this group of disabled abusers by attacking me for calling them out on on their abusive behaviour towards the disabled. I have yet to see a single instance of andysnat’s internet trolling of a disabled patient group being criticised. The fact he seems to be a BSF admin and is keeping the rest of the forum updated on his contributions on the Support Dr Sarah Myhill Facebook group suggests hostility and contempt towards disabled people. You seem to find that acceptable as I have yet to see a comment of yours on BSF condemning it or any of the rest of his hate speech towards sick and disabled patients and their online support groups.

    As I have said, given the microscopic membership of the online cult group of BSF, it is ironic that one of their members has actually been proven to have harassed a medical scientist and doctor, almost destroying their career, and was implicated in the suicide of a patient. Yet here we have hundreds of thousands of M.E. patients and there is not a shred of evidence yet produced to prove any of Wessely’s accusations about any of them that have any basis in fact. And we already know the pro-Wessely claims of harassment amount to no more than denouncing newspapers for printing stories which question Wessely’s science and his awards for bravery. More like personal sour grapes than harassment.

    Amy, if you are making a contribution towards changing the disablist attitide on that forum then you don’t seem to be making a very good job of it so far. The fact you won’t engage with myself, who is standing up for the rights of disabled people, but you will engage with some who are abusing disabled people doesn’t make any sense. But then, neither does BSF members boasting about slapping women until they bruise their hand make any sense to me either. It certainly won’t to the victim targeted for such vicious anti-social internet behaviour from a forum one of whose members has already been found guilty of harassing a figure in the public eye.

    I think anyone with any experience of such online cultish forums as BSF will immediately recognise the group behaviour of mobbing, serial personalised insults, excessive interest in personal details and so on that is being aimed at Angela Kennedy as well as the downright lies she is being subjected to. One commenteer even rejoices in the Ben Goldacre personality cult by referring to the leader as, and I paraphrase, “a media hoor and he loves it”.

  103. Amy said,

    Joe, I didn’t attack you for your comments about BS. I expressed anger for your attack on me personally, which was totally over the top. You need to calm down and read carefully. And I am hardly posting on BS on a frequent basis.

    I’m really sorry but I can’t engage properly with all the online politics surrounding ME. No doubt you will dislike or attack me for this, but I am simply not well enough to be a campaigner. I do sometimes feel bad that I am not doing more. But (and I don’t say this for sympathy but just as a fact) I struggle just to get through the day. Having a bed bath from carers is so painful it makes me vomit.

    In terms of me not “calling people out” on Bad Science, if you read my comment fully you will see what I said to Angela about genuinely not being well enough for protracted debate. And if you have gone through my comments on BS you will see that I post very infrequently these days, as again, I am not well enough.

    If this is not good enough for you there is nothing else I can say or do.

  104. Amy said,

    And Joe, in terms if post count, I have engaged with you in the last 24 hours about as much as I have on BS over a much longer period.

    It’s not just researchers who feel put off getting involved in ME, it’s also many patients who are unable to take the level of aggression involved in any debate.

  105. Jack said,

    Amy, take care of yourself. Don’t worry about this nonsense. Joe’s being a prat and rather nasty towards someone who is clearly not well – someone he should be defending without discrimination :)

  106. Mike Ward said,

    I’m with Jack on this one

    And correct me if I’m wrong but Jones wasn’t found guilty of harassing anyone. Some people might like to stop exaggerating out of all proportion

  107. joe kane said,

    I didn’t attack you personally Amy as I don’t know you.
    I see you are still refusing to condemn the disablist abuse on BSF despite the fact you did mange to object to me calling it a cult. Now you are objecting to my questioning your refusing to stand up to disablist bigots on an online forum. You obviously care more about BSF than the rights of disabled people not to be subjected to disablist abuse from online bigots.

    Anyway, you were having nothing more to do with me because I called BSF a cult and because I questioned your system of values that puts the rights of disablist bigots before the rights of disabled people.. That promise didn’t last long. You’re still defending the bigots on BSF and attacking supporters of disabled human rights.

    I see firestorm fleming Jack is now using Amy’s fact-free allegations of abuse as an excuse to call people names. He also thinks I should be defending members of a forum which is implicated in driving a disabled person to suicide and tried to destroy the career of a doctor and medical scientist. Those are the very claims which Wessely alleges of ME patients and their advocates too.

    I also see someone is making excuses for “Jonas” Stuart Jones of the BSF who tried to destroy the career of a doctor and medical scientist and whose online abuse and actual real online harassment is also implicated in driving a patient to committing suicide. Imagine if an actual disabled patient forum had been guilty of such behaviour? BSF and its fanclub might actually have some real evidence to support their campaign of vexatious abusive claims that disabled people are anti-social towards doctors and scientists.

  108. Amy said,

    Joe, to me being told that “If you’re identifying yourself with this online cult then you must be guilty of harassing medical scientists, doctors and driving patients to suicide.” is, if not a personal attack, then a very nasty allegation against someone you admit to not knowing.

    Secondly, I just don’t have the energy for this kind of extremely aggressive, circular debate. I don’t think you will ever even try to understand my position. And yes, I was offended by the accusations you were making against someone in my position (i.e. utterly sympathetic to those with ME as I have it myself).

    I have posted on Bad Science, to point out that I don’t agree with everything which is said there but that, as I’ve said to you, I cannot get into protracted debate. I’m afraid I have been critical of the tone you have taken with me, and your general lack of nuanced understanding and considered thought.

    I really won’t be replying again. I am out of here.

  109. ianal said,

    Is it worth pointing out that harrassment, in its ordinary meaning, does not equate to the crime of harrassment, which has a specific definition in law?

  110. Jack said,

    Probably not ianal. I honestly don’t think that some people want to know.

    If I receive what I perceive to be threatening emails, I might term them collectively, ‘threats’ or forms of ‘harassment’ if said emails were trying to unreasonably prevent me working or prevent me saying what I wanted to reasonably say for example. Seems perfectly understandable that my interpretation and use of language is down to me.

    Similarly if I feel I am being ‘stalked’ for example or if I had been subjected to an attempted assault. If some instance did make it to court and the case resulted in a guilty verdict, only then would the actual charge and language used be pertinent in law.

    Until then, I’d be free to call it what I wanted particularly when speaking generally in relation to more than one instance. If I pointed the finger at an individual and they objected, then that individual might pursue the accusation themselves within the law feeling they had been libelled. After having perhaps engaged with me in a reasonable manner to attempt to resolve the issue.

    All this is semantics in my view and a deliberate attempt to distract from the main issue, namely that this behaviour whomsoever did it or whatsoever it actually comprised; delivered against individuals engaged in research including but not limited to Wessely by any means; was wrong and should not be deemed a reflection of the behaviour let alone views of all those affected by ME but a very few.

    It is the actions of those few that have kept this a ‘hot’ topic and if others had condemned these senseless actions out of hand, it would not in my view have continued to dominate discussion in the way that it has.

    So ‘nice one’ guys. ‘Congratulations’. Whoever you are. I dare say you think it was worth it but I have to ask – what has possibly been achieved that can be seen as in any way productive or helpful?

  111. Angela Kennedy said,

    It should be quite clear that Joe is -rightfully – criticising the double standards of Bad Science supporters in this whole issue. That some people here are choosing to sidestep that elephant in the room is a major problem.

    He has shown, as have I, how the term ‘harassment’ being used by Wessely and his colleagues is disgracefully subjective, and by their (fallacious) logic all of us can be called ‘harassers’, including BSF heroes Stuart Jones/’Jonas’ and Brian Deer. Objecting to Wessely and his colleagues publicly counts as ‘harassment’ in their narratives, as we’ve seen.

    Cut away from the Andysnats and Firestormm’s ideological rants etc. the weird groupthink, the moral outrage that I allegedly failed to answer a question while being mobbed etc. THAT should be a very sobering thought and massive concern for anyone who considers themselves critically analytical, rational and committed to scientific progress without the threat of intimidation. It really should.

  112. Jack said,

    Anglea. On Bad Science you posted first making claims about Wessely and his ‘beliefs’ or some-such. You were asked nicely to provide some examples of this given that you claimed their were so many. Then you went off on one or three engaging with commentators who you felt slighted by – or made claims about the whole ethos of the forum – despite being asked for examples. That was all and is all they are still waiting for – examples. Why not try and get them on your side (without them having to read you book of course)?

  113. Angela Kennedy said,

    @ Jack/Russell/ Firestormm: Ok – ‘beliefs or some-such’ doesn’t inspire confidence in your ability to ascertain the facts of the situation.

    But it seems that this is about where I was discussing the beliefs of proponents of psychogenic explanations for physical illnesses (NOT JUST Wessely) that patients are, illegitimately, ‘blame avoiders’. I was understandably reluctant to provide all of the copious examples of that belief that is available (there appear to be hundreds), and was also rightly concerned how evidence being already provided was being summarily dismissed rather than discussed reasonably thoroughly. BUT – I did then give two examples! So I did answer the question. I expect the way the thread moved was so fast it would have been easy to miss. This makes what you’ve said above, though, wholly unsafe. You are basing your address on a mistake.

    Anyone genuinely interested in this whole subject is likely to WANT to read the book. I cannot put 7 years of research and references and 90 thousand words of discussion into a Bad Science forum, especially one that is hostile. If anyone is GENUINELY interested in discussing with me, I am MORE than happy to do so. However, I am already giving evidence here and I did on the BSF.

    i don’t want to get anyone ‘on my side’. My argument, position etc. stands or falls on its own merit. I merely wish to make my points in an environment where people are reasonable and intelligent, and not almost constantly making attacks to the person. Trying to claim I’m not an academic, or that my work is not academic, is just one example of that ad hominem that’s being done. Another is bringing up FALSE allegations by Charles Shepherd from 2005. ME politics is indeed surreal and nasty at times, but you have to wonder at the agenda of the anons on Bad Science doing that.

  114. benji said,

    Angela, people are genuinely interested in discussing with you. The examples you provided were not fully referenced, and you were simply asked to expand the references, which is a very straightforward thing to do. The fact that you are spuriously make false claims of ad hominem attacks which have not been made towards you and refusing to engage with the request to fully expand your references to something which is meaningful and searchable demonstrates the principle that you are anything but MORE than happy to discuss this sensibly. You are being evasive.

  115. Jack said,

    Angela, Your TWO examples I remember well and you may not remember they were discussed. Without wishing to double-check on BS at this moment in time – you can do that I am sure – one of the attributions you made to Wessely was not even his – it came from someone else. I get it. This vast amount of published information affords an impression. You were saying how much of this information is out there – the thread was about Wessely and you were asked specifically for things from him that gave you a belief that those who dislike him have grounds to do so. As yet it doesn’t appear to have been provided. And yes, perhaps the thread become so much about your claims against those posting on BS it did move rapidly. But the same question remains – indeed it was being asked again reasonably last night if I recall correctly. I will review the two examples you did provide again – later – when I’ve had my brekkie. I do hope you return to that thread. I have been around on the internet forums for only a couple of years believe it or not and I think a lot of what I hear is based on things that are now lost amongst all the noise. It would be interesting to see those examples – if only your ‘best’ selection. And remember this is about Wessely’s views – apparently unreasonable ones – in relation to my condition not views in relation to ‘psychogenic’ explanations for chronic illness in general. Thanks. Porridge-time :)

  116. Jack said,

    Okey dokey. Porridge done.

    I think you joined just before being welcomed and then asked your opinion by Chris on this example referred to by Lady Mar: http://www.badscience.net/forum/viewtopic.php?f=3&t=31452&start=450 as being of Wessely’s poor opinion of ME.

    Another example of misquotation alleged to have reflected Wessely’s opine was again given by Chris here: http://www.badscience.net/forum/viewtopic.php?f=3&t=31452&start=450

    Then it all got a bit silly, and JDC asked: “I think it would be helpful if people stuck to those examples where Wessely has “used similar language when talking about ME/CFS sufferers”. If they exist and are sound, then why use examples where he is not talking about ME/CFS?” Comment made here:

    http://www.badscience.net/forum/viewtopic.php?f=3&t=31452&start=475

    And then we finally got your examples, but I’ll post all that you said, to be fair:

    “Right. To JDC first [re that comment I posted above I presume]

    I cannot cite all the many examples I know of. It’s too much. There’s no ‘best example’ because they are all examples of flawed reasoning, I would argue. They are merely examples, and take place within a wish to deny ME sufferers the right to enter a ‘sick role’. But there is enough of them to show a tendency to, ideologically, treat ME patients as illegitimately avoiding blame: a highly problematic tendency.

    But – a few examples: Wessely (1990: 92) argues that the attribution of ME to infection is related to “a decline in the acceptance of personal responsibility for illness” and that such attribution conveys benefits such as “an avoidance of guilt and blame”, claiming guilt and self-blame have been found usually absent in “chronic fatigue patients”.

    Butler et al claim that: Continuing attribution of all symptoms to a persistent, untreatable “virus”, continues to increase helplessness, although preserves self-esteem. (1991: 153)

    (If you want full reference source citation I’ll give them).

    My problem here is that it is likely these two reasonably short examples will be summarily dismissed, and I will be required to give more and more (which will never be enough). But there is a regular treatment of ME sufferers, alleged ‘somatisation’ sufferers, people given diagnoses of MCS or TAS, as ‘blame avoiders’, within Wessely’s work, and many others.

    In the meantime- what about the comment about ‘functional disorders’? You admitted he could have been clearer – but you have not shown Wessely to be clear about what what causes ‘functional syndromes’, whatever part of the body they allegedly arise etc.

    RE excusing selves from being rational – I was talking generally – but since I came on here today I’ve had to deal with a rather large number of posts where rational debate was being precluded by ad hominem.

    This forum has become known for its attacks on ME sufferers and the people who support them. That includes me – someone who, you should all be aware, but if not I can explain – has been falsely accused of personally harassing Wessely.”

    http://www.badscience.net/forum/viewtopic.php?f=3&t=31452&start=525

    Because you didn’t provide – or were unable to provide – specific citations despite offering them; it took a while, but I think Eleanor and Chris made some attempt to address these examples and others’ followed.

    Chris’ comment about Butler et al. was here for example: http://www.badscience.net/forum/viewtopic.php?f=3&t=31452&start=550

    And that’s as far as I got I’m afraid. More comments did follow specifically about your examples – but I can’t be arsed to post links to them all and JDC’s blog has already suffered enough. And for the record, as you are also a member of BS, does Joe’s criticism of Amy apply equally to you?

    Every forum has a ‘report’ facility and every forum will have rules or should do. You did apologise on BS for your interpretation of the ‘misogynist’ comment that was made and was removed – but I noticed the other day you haven’t corrected this on your own forum:

    http://peoplewithme.com/thread-1993-page-5.html

    A forum that incidentally does not appear to have a ‘report’ function.

  117. Angela Kennedy said,

    @ Benji – see this is where I have a big problem with the bad Science forum. It’s clear to any reasonable person, that personal attacks on my integrity, casting aspersions on my scholarship or my position as an academic etc. calling me a hater and harasser (and attacking others as well) are attacking me as a person, NOT engaging with my points. That is ad hominem! It’s clear to any reasonable person that constant posts demanding information at the same time as unreasonable ad hominem would make it physically difficult – impossible – for any poster to make any coherent thread of the points they were trying to make, let alone engage one-to-one with someone else, especially if one cannot sit at the computer for hours on end. Yet you still appear to sincerely believe that no ad hominem took place. That complete lack of understanding of what is going on is uncanny, frankly. And that this may be a ‘groupthink’ situation, where hardly any of you recognise relentless ad hominem when it is staring you in the face, means the BSF is NOT a place where reasonable discussion can take place!

    Another thing that concerns me is that you want to focus on Wessely, as if he’s some special case, exactly the thing BS forumites accuse the community of doing! I – quite rightly – place Wessely’s beliefs within their proper context – i.e. common claims made by proponents of psychogenic explanations for physical illnesses. I wish to tackle the arguments, not trying to mind-read Wessely, which is what some of you there are dangerously close to doing.

    @ Jack – I don’t need you to reproduce the thread over here. I was trying to discuss at least three different issues related to quotes at once, while being attacked and demands made for more evidence before I’d had a chance to address the evidence that had been already brought up, both by me and by others. Your faith in the moderators I do not share – for reasons already highlighted by Joe here. I will go back when I’m ready (yes I’ve got academic work to be getting on with!) – but I expect the same thing to happen, sadly.

  118. Opti said,

    Disingenuous doesn’t even begin to describe your behaviour Angela.
    I have a diagnosis of CSF/ME and I would like to make it clear that you are no sort of activist on my behalf. There are many examples of where you have hindered the cause of CFS/ME patients, so many in fact that I find it impossible to single one out. But they are there, believe me.

  119. joe kane said,

    Russell John Fleming /Firestormm/Jack has been vociferously denouncing harassment on so many online forums and groups, and yet his first comment directed at me on this thread was to call me names.
    So much for denouncing harassment.

    When asked to denounce harassment and abuse of the disabled on BSF one member claims its just not possible, for reasons I fail to understand given her ability to denounce people on this thread, whose only crime is they are anti-disablist. Disagreement over intellectual arguments on BSF is not the same as standing up to the disablist haters on that group. If you don’t stand up to the haters then you are no worse than them. It’s a simple moral principle. After all, a BSF hater has already been implicated in the suicide of a sick and vulnerable patient. It’s everyone’s moral duty to protect such people given the consequences if we don’t..
    So much for denouncing harassment.

    Then someone else makes the absurd proposition that “Jonas” Stuart Jones wasn’t involved in a campaign of online abuse and harassment. It’s as stone-wall a case of using the internet as a tool to harass and abuse as there has ever been, anywhere.
    So much for denouncing harassment.

    Nearly a month now since the IoS letter written by Crawley and not a shred of evidence has been produced to prove there has been any real harassment of Wessely, or any of the rest of his school of disability denial, by sick and dying patients. What there is, as Crawley’s letter makes clear, is a campaign of vexatious abusive complaints of anyone who dares question Wessely’s pseudo-science, abusive medical ethics and the bravery award he embarrassingly gave to himself given he’s on the boards on the organisations making the award..

    ps
    Anyone interested in a case of bad science ought to look into Esther Crawleys’ SMILE experiment on sick children where she proposes to test whether faith healer Phil Parker’s magic actually works on a physical disease process.
    Start here –
    frownatsmile
    raising objections to unethical research on children with ME/CFS

    http://frownatsmile.wordpress.com/

  120. Mike Ward said,

    Joe Kane

    I don’t have time to cover all your points but I will clarify a couple of major points. You refer to the BSF member (in reality someone who has just made a few posts on the forum – much like Angela) having been proven to be harassing someone by their own professional body. This is an untruth and clearly libellous.

    I don’t know if a patient has committed suicide because of the GMC action against that doctor (if you remember the doctor had to make extensive changes to their website in order to satisfy the GMC). If this has happened (I have seen no proof apart from an unsubstantiated allegation by the doctor) this could equally be because the doctor herself has engendered a culture of dependency on her which most medical professionals would consider to be extremely unhealthy. I guess we will have to see the evidence to decide.

    You could be trolling but Poe’s Law makes that difficult to call

  121. Andysnat said,

    Just to add to Mike’s comment above, I believe the GMC was concerned enough that they withdrew the ability of the doctor concerned to prescribe medication for six months – until they had reassured themselves on patient safety grounds.

  122. joe kane said,

    So clear it up for me Mike Ward, if you’ve time, what was BSF commenteer and member “Jonas” Stuart Jones found guilty of eventually by his own professional regulatory body, as you don’t say?

    Here is what they had to say –
    “Whilst this Panel does not question the Registrant’s motivation with respect to his interest in the use of internet sites such as the Bad Science Forum to discuss and debate clinical issues it nevertheless finds that his posts were disparaging, inappropriate and unprofessional….his behaviour had the potential to damage public confidence in him and his profession…The Registrant admitted misconduct in making disparaging comments on the Bad Science Forum…could undermine public confidence in him and in his profession…The Panel finds that the Registrant’s fitness to practise is currently impaired by reason of misconduct..”
    Stuart Jones
    Hearings and decisions 20/12/2011
    HCPC
    Health & Care Professions Council

    http://www.hpc-uk.org/complaints/hearings/index.asp?id=2556

    Angela Kennedy is no more a member of your online cult group than she would be member of the KKK if she was to physically intervene to stop one of their lynchings. It takes courage to stand up to the online bullying and harassment she is being subjected to on BSF and on this blog.

    ps
    Just to give a flavour of “Jonas” Stuart Jones BSF comments. Apparently such comments don’t constitute harassment and abuse. Such is the warped moral values and warped world view of members of internet cults –
    “Yup, that’s exactly why I complained actually, to give SM a bucket load of administration to wade through and increase anxiety levels in her patients, very pleasurable in deed!”

    http://www.meassociation.org.uk/?p=9879

    Yes we wouldn’t want patients to become too dependent on doctors they actually trust. Better let the Wessely school loose on them instead whom most ME sufferers and advocates haven’t the slightest confidence in and who have no proof their biopsychosocial-CBT/GET has any basis in medical fact that it is anything other than iatrogenic for ME patients..

  123. Mike Ward said,

    Well his comments clearly didn’t constitute harassment as your own quote shows.

    And as anyone who wasn’t trolling or deluded would be able to tell the comment about increasing anxiety levels or patients was clearly a sarcastic reply to comments like yours that were taken massively out of context.

    It is quite clear that he had legitimate concerns (which the GMC thought serious enough to take remedial action against the doctor in question) and he made quite clear his motivations were about patient safety.

    If you disagree perhaps you can quote the comment he was replying “yup” to in the part you have quoted.

  124. Wake up said,

    @Andysnat

    I believe the GMC finally decided they had no reason to be concerned and everything was dropped after they were reassured that patients were safe.

  125. Mike Ward said,

    Wake up

    They reached that decision (which may or may not have been the right one) only after the doctor in question changed some of her procedures, website etc. They did not suggest in any way shape or form that the original complaint by the BSF poster was unwarranted or malicious.

  126. Wake up said,

    @Mike Ward
    I don’t see the issue. The GMC made their requests which were met. If a patient had any time been at risk they would have enforced permanent sanctions. The GMC panel who were tasked with the case were not told to investigate the original complainants and their behaviour.

  127. Wake up said,

    Simon Wessely does not investigate using the scientific method. His beliefs are therefore irrelevant and not part of the empirical evidence base that ME is a neurological disease.

  128. Mike Ward said,

    Wake up

    Sorry if I didnt make this clear. All I wanted to make clear (especially following Joe Kane’s interesting posts on the subject) was that the GMC did think the original complaint was warranted. Furthermore, despite Joe Kane’s comments the BSF poster made the complaint with honourable motivations (as found by his professional body) and no patient came to harm because of his conduct (as found by his professional body)

    With a fast moving thread like this it easy to talk at cross purposes so sorry once again

  129. Wake up said,

    @Mike Ward
    You are perfectly clear. The GMC felt there was a case to investigate, they then failed to investigate until they were faced with having to admit they had imposed sanctions on a doctor for being a midwife to piglets. Once their “error” came to light they dropped the case, knowing full well that if they had investigated there was no reason for the sanctions.

  130. Angela Kennedy said,

    @ Opti: I call rubbish on your ideological yet vague finger-pointing. I put it to you your support of attacks on the ME community coming from Bad Sciencers is ACTUALLY supporting continuing damage to the ME community.

    @ Mike Ward – Jonas was not found guilty of misconduct by his own professional body for no reason, was he? I note you conveniently sidestepped that.

    The suicide of the patient was as a result of his complaining to the GMC – yes it does looks that way- though there were other complaints as well. The point is someone died because they felt they had no hope because they believed Myhill could no longer treat them, because ME patients are treated so badly within the NHS, courtesy of the edifice of psychogenic misdiagnosis. This is something I’m trying to show people, who unfortunately appear to be looking with their eyes shut.

    The point is – and again you Bad Sciencers are all very good at sidestepping the elephants in the room – the allegations against ME sufferers and their supporters of ‘harassment’ and ‘abuse’ are for them undertaking complaints that you believe the likes of Stuart Jones and Brian Deer to be heroes for. Surely you see the inconsistency in this? Are the majority of Bad Sciencers collectively so hypocritical and irrational that they will not acknowledge this? Are you not concerned about the ad hominem merchants like Andysnat who so obviously have an agenda to push, one that is prejudicial to the ME community? Or is it there is so many rubbish posts on the Bad Science ME/CFS threads that people don’t have the time or energy to really look at them with a critical eye?

    I’m not keen on calling people ‘you Bad Sciencers’, but I can’t see any other description that fits, when there are so few there prepare to stand up against the attacks and misrepresentation of ME sufferers or supporters who don’t toe a party line – “Wessely and his colleagues’ beliefs are sacrosanct, and anyone who disagrees is a moron, and we bait morons because that is our god-given duty – whoops! not god” (I say all this as an atheist btw).

  131. Angela Kennedy said,

    And I echo Joe Kane’s comments about the SMILE trial of the Lightning Process. I mentioned it before here as well. But people not interested, it seems: again nicely sidestepped. It seems woo is ok when an approved doctor supports it!

  132. Wake up said,

    The SMILE trial is to test the Lightning Process, but using self report questionnaires as an assessment tool. This is woo built on woo.

  133. MIke Ward said,

    Angela I didn’t sidestep anything. Yes there was a finding of misconduct but there was no finding of harassment or harming patients despite some people’s attempts to fabricate the appearance of such

    And, Wake Up GMC only lifted the doctors suspension AFTER she made, for instance, required changes to her website. The piglet complaint was indeed ridiculous but as it is not what is being discussed here I fail to see the relevance.

    Thanks for the information about the suicide but I can find no independent support for what you have statesd.. Was there an inquest? What were the findings? Or do we have to make do with your word?

    Or buy your book?

    I think I’m going to leave you as I originally intended. There really doesn’t seem to be any reasoned argument in some of these posts.

  134. Wake up said,

    @MikeWard
    The doctor had already complied with the requests and there was nothing they had done which was deemed to have harmed any patients. It was at a later date that they realised their piglet “error”. This behaviour by the GMC in failing to investigate the veracity of the complaints until the piglet issue was introduced demonstrated that the GMC is unfit for purpose. As the credibility of the GMC was irreparably harmed by the piglet saga so too was the case against the doctor. There was no case to answer.

  135. benji said,

    Joe Kane – deliberately leaving out the context of Stuart Jones’ post, which was clearly and obviously ironic, is a pretty shitty thing to do, and merely serves to outline that you’re perfectly willing to warp facts to serve your own pre-existing narrative. Just a sad little man using lies to fight against reality.

  136. Wake up said,

    @Benji
    The GMC did not take your view that Jones’s comment were innocuous or are you suggesting they didn’t have the full context?

    “It has considered the question of which sanction to impose in ascending order of severity. It notes that where a Panel has determined that fitness to practise is impaired, it is not obliged to impose a sanction.

    It first considered to take no further action, but decided against this course having regard to the seriousness of misconduct set out above. To dispose of this case by taking no further action would neither reflect the seriousness of misconduct found nor address the public interest considerations referred to above. This misconduct cannot, in the Panels judgement, be categorised as minor.

    Having decided that to take no further action would not be appropriate in this case, it next considered the imposition of a Caution Order. In that regard it considered all the criteria set out in the above mentioned indicative sanctions guidance. It notes that this case does not involve any issues in relation to the Registrant’s clinical competence and further notes that the misconduct did not cause any patient harm. The Registrant has apologised for his misconduct, now realises that his actions fell below the standards expected of a registered professional and has shown genuine remorse. Further, it is the Panel’s judgement that the majority of his posts on the Bad Science Forum were not inappropriate and that there is a low risk of reoccurrence of his misconduct.

    The Panel has decided to make a Caution Order. It notes that 3 years should be regarded as the bench mark for such an Order but has decided to decrease that period to two years to reflect the mitigation present in this case, set out above.”

    http://www.meassociation.org.uk/?p=9879

  137. Andysnat said,

    Mendacious bunch these ME/CFS activists don’t you think Mike?

  138. Mike Ward said,

    Andy

    I’m pretty sure there are many decent people with real concerns who are being done a disservice by a small number of troublemakers

    Wake up.

    You have misquoted Benji who said “irony” not “innocuous”

    You also seem to be quoting the GMC as writing a whole tract of stuff which is actually down to a totally different organisation

  139. Wake up said,

    @Andysnat
    Are you a patient? An activist for something? What actually is your interest?

    @Mike Ward

    You have misquote me as I never said Benji said innocuous. But if you wish to change the subject so be it.

    Good for you in noticing it was Health Professions Council, not the GMC, however they still do not agree that Jones’s comment were innocuous or are you suggesting they didn’t have the full context?

  140. Andysnat said,

    @Wakey-Wakey

    HPC said (from your quote) –

    “Further, it is the Panel’s judgement that the majority of his posts on the Bad Science Forum were not inappropriate…”

    That just about sums it up. Didn’t they finally get him on the uberquack comment? That was so funny, but deemed inappropriate.

    For balance, lets set the record straight shall we. Jonas’ complaint was upheld by the GMC, the doc was suspended for six months to enable the GMC to decide if she was fit to practise, and she now has a five year caution on her record. I think she got off lightly.

    The Rosemary Hogg affair was very funny, a rather good publicity stunt by the docs supporters.

    As for the alleged suicide, it is terrible that a doc can have such a malign influence on a patient that the patient kills himself instead of phoning up a proper doctor.

    … and you did say Benji said innocuous .. look… its four posts up !!!!

  141. Wake up said,

    @Andysnat

    The quotes that sum up the panels judgement would be:

    “This misconduct cannot, in the Panels judgement, be categorised as minor.”

    “The Registrant has apologised for his misconduct, now realises that his actions fell below the standards expected of a registered professional and has shown genuine remorse.”

    To correct the record, the GMC has been shown not fit for purpose due to their failure to investigate whether any sanctions should have been imposed which led to their “error” in the piglet saga.

    I see that you too wish to change the subject and have difficulty reading. So be it. The evidence is 5 posts up.

  142. barney said,

    “The doctor had already complied with the requests ” Bullshit.
    Lightening process already discussed on the forum & referred to the ASA in 2010. Made of purest woo the said.

    That quotation from jonas was posted with deepest irony obvious to anyone with half a brain involved in that discussion. Now taken out of context it’s being used to perpetuate a myth by people who would recognise misrepresentation if it stood naked on a piano singing “look at my beautiful clothes”.

    Kennedy’s “example” of Wessely “referring to people diagnosed with total allergy syndrome or multiple chemical sensitivity (don’t forget mostly by other doctors) on this occasion. But he (and most importantly others) have used similar language when talking about ME/CFS sufferers.” has been produced without citation or source, out of context and is of dubious value at best.

    I have no doubt whatsoever that having a list of flawed information advertised on Myhill’s website given to the GMC was of considerable inconvenience and quite possibly harassment to her. The evidence of the flaws on the website were there writ large for anyone to read. The point, however, was not to attack (or harass) any community; it was to have unsound medical information removed from a professional’s website.

    The GMC has this warning on Myhill’s registration: “On Dr Myhill’s website she made statements in relation to contraception and breast cancer screening that were factually incorrect; clinically unsubstantiated;and contrary to national guidelines. In so doing she used her position as a registered practitioner to exploit patients’ lack of medical knowledge by arousing ill found fears for their health. This conduct does not meet with the standard required of a doctor. It risks bringing the profession into disrepute and must not be repeated. The required standards are set out in Good Medical Practice and associated guidance. In this case, paragraph 57, 62 and 65 are particularly relevant. ‘You must make sure that your conduct at all times justifies your patients’ trust in you and the public’s trust in the profession.’ ‘You must not put pressure on people to use a service, for example by arousing ill founded fears for their future health’ and ‘You must do your best to make sure that any documents your write or sign are not false or misleading. This means that you must take reasonable steps to verify the information in the documents, and that you must not deliberately leave out relevant information.’ Whilst this failing in itself is not so serious as to require any restriction on Dr Myhill’s registration, it is necessary in response to issue this formal warning”

    So Myhill’s GMC issue is to do with exploiting patients’ lack of medical knowledge and arousing ill found fears for their health, jonas’ GMC issue is because he was a bit disrespectful about a fellow medical practitioner in an online forum. Potential for a false equivalence there perhaps.

  143. firefly said,

    For the record, Jonas/Stuart Jones’s disciplinary hearing did not once mention “harassment” or “abuse” (feel free to check the transcript).

  144. Wake up said,

    @barney
    If the doctor had not complied then why did they drop the sanctions? I’m afraid your understanding of events is confused.

    Why do you raise the following?

    “Lightening process already discussed on the forum & referred to the ASA in 2010. Made of purest woo the said.”

    If Jonas’s comment was posted “with deepest irony obvious to anyone with half a brain involved in that discussion”, then why did the panel state that “the Registrant has apologised for his misconduct, now realises that his actions fell below the standards expected of a registered professional and has shown genuine remorse.”

  145. jdc325 said,

    @Mike

    Andy

    I’m pretty sure there are many decent people with real concerns who are being done a disservice by a small number of troublemakers

    Indeed. I would say that the majority of people who responded to this post both here and elsewhere on the internets have been polite, reasonable and, as far as I know, completely honest.

    The behaviour of the few people who have misrepresented the views of individuals (notably Wessely and Jones) and presented distorted and inaccurate accounts of situations involving them is disgraceful but I don’t think it is fair to state (or imply) that their behaviour is typical of ME/CFS activists or patients – as far as I am concerned it is not.

  146. firefly said,

    …and also for the record, his complaint to the GMC was upheld and the harshly-worded warning currently on Dr Myhill’s record is a direct result of that (feel free to check the GMC website).

  147. jdc325 said,

    @Wake up

    If the doctor had not complied then why did they drop the sanctions?

    Good question. It is true, though, that the doctor did not comply and that the sanctions were dropped. See here.

  148. Wake up said,

    As I have said the GMC has no credibility after the piglet saga.
    This sums up the GMC http://www.supportdrmyhill.co.uk/all_charges_dropped.html

  149. barney said,

    @Wache auf I mentioned the lightning process as someone appeared to be upset that it wasn’t being attacked. It had been elsewhere, but if you’re implying that it’s irrelevant here I’d agree. It’s just another diversion from someone’s failure to deal with substantive questions by pointing at the sky and shouting “ooo look, an eagle!”. Maybe, “There are agenda pushers here, people acting in bad faith, and perhaps there are some who have found themselves part of a groupthink”.

    jdc325’s dealth with the other confusion I see.

  150. Wake up said,

    Why do I get the distinct impression that some believe if they shout skeptic first they are the only persons able to be in control of their faculties.

  151. Wake up said,

    Lets try and return to the actual topic. The divertive tactics by those justifiably criticised for failing to use the scientific method.

  152. jdc325 said,

    @Wake up

    As I have said the GMC has no credibility after the piglet saga.
    This sums up the GMC http://www.supportdrmyhill.co.uk/all_charges_dropped.html

    Your original claim was that the doctor had complied; you later asked why the GMC would drop the sanctions if they had not (implying that the GMC abandoning the sanctions suggested compliance). I have pointed out that the GMC dropped the sanctions despite the doctor not complying. Your response does not address the fact that I have shown that your original claim was untrue and that the implication that the GMC would not drop the sanctions if someone did not comply did not hold water. Do you accept that the GMC dropped the sanctions in spite of the failure of Dr Myhill to comply? Because that is exactly what happened. Whether the GMC has credibility or not (for what it’s worth, I don’t think I know anyone who has a high opinion of them) has no bearing on whether they dropped the sanctions without compliance. Which, contrary to your claim, they did.

  153. jdc325 said,

    Lets try and return to the actual topic. The divertive tactics by those justifiably criticised for failing to use the scientific method.

    I think if you re-read the blog post you’ll find that the topic is the harassment of researchers and the defence of that harassment. Oh, and the consequences.

  154. pipsqueak said,

    Morning all, a couple of days ago, on bsf, I asked our newcomers for a single fully referenced example of Wessley being rude about or dismissive of ME patients. Angela told us that there were hundreds of such examples, and yet nobody has provided one so far. Perhaps some of the commenters in this thread can help.

    To be clear, I am interested in seeing Wessley’s own words in context, given that too many quotes floating around the internet have turned out to have been rather misleadingly sipped.

  155. Opti said,

    @Angela Kennedy
    You keep using that word ‘attack’. I do not think it means what you think it means.
    And you, an academic.
    I’m staggered by the equivocation, prevarication and downright mendacity used by you and your fellow ‘activists’ in these comments in support of your threadbare arguments.

    FWIW I have had excellent service from the NHS in helping me manage my CFS. I’m not ‘cured’ but that was never held out as a likely outcome. I have my ups and downs but luckily I don’t seem to have the variant that strips one of ones critical faculties and moral compass.

  156. justinreilly said,

    @Andysnat,
    As Angela pointed out, merely complaining to someone’s boss is not harassment if the claim is justified.

  157. barney said,

    Woah there Nelly, how would you define justified? Emailing someone’s *employer* over a *personal* matter is justified? How that work then, and on which planet? BTW I’m being very generous here, in not digging into the merits of the accusation of slander (well, she said libel, but obviously she hasn’t a scooby).

  158. GKGK said,

    Angela, did you really send a letter to Wessley’s boss? I had no idea that you personally harassed him in that way. Of course sending a letter to some someone’s boss is harassment! Now if you had been a patient of his and were filing a complaint, that would be different. But as an advocate with no other connection, to go to someone’s boss: it’s clearly harassment.

    GKGK

  159. Wake up said,

    @jdc325
    The doctor had complied.

    “I was subject to General Medical Council Interim Orders Panel Hearing on 29th April 2010, as a result of which pages had to be taken down from my website…” http://www.supportdrmyhill.co.uk/defence_document_issued.html

    Once again you are confused as to the discussion topic, which is the divertive tactics by those justifiably criticised for failing to use the scientific method. There is no evidence for your claims that the topic is anything else and therefore no consequences to speak of.

  160. Wake up said,

    @GKGK

    This is not the definition of harassment as defined in law, which must include two or more occasions.

    “Of course sending a letter to some someone’s boss is harassment!”

    The harassment act states:

    “the person whose course of conduct is in question ought to know that it amounts to harassment of another if a reasonable person in possession of the same information would think the course of conduct amounted to harassment of the other.”

    http://www.legislation.gov.uk/ukpga/1997/40/section/1

    “A “course of conduct” must involve conduct on at least two occasions.”

    http://www.legislation.gov.uk/ukpga/1997/40/section/7

  161. ChrisP said,

    It would appear that Angela Kennedy wrote on several occasions in the latter half of 2007 to Simon Wessely’s immediate boss and to John Williams to complain about what other editors of Wikipedia were up to with respect of her activities on Wikipedia and claimed Wessely had defamed her in an e-mail written to someone else, but which she had never seen. Kennedy then placed the correspondence on-line. In it there is this rather strange request:

    “request from you confirmation of whether, or not, an email was sent
    to Guy Chapman, or other person, by Professor Wessely, claiming that
    I, specifically, have `harassed’ him, or that `One Click’, a group
    with which I was previously involved, have `harassed’ him. I also
    request access to any communications between Professor Wessely and
    this person around this issue.”

    Actually the correspondence is a fascinating read

    http://cfs-facts.blogspot.com.au/2008/02/wessely-and-harassment.html

  162. Angela Kennedy said,

    @ Chris P, yes it is indeed a fascinating read. But your notion of a ‘strange’ request is ridiculous. Obviously I was – and am – trying to protect myself from the defamation against me that had taken place, in the face of the dearth of -co-operation from Wessely’s employers.

  163. Angela Kennedy said,

    @ GKGK, this is where I despair at the faculties of reason of some people – or even their ability to read a thread. I’ve already explained this to Andysnat, but here goes, AGAIN: By your logic, someone complaining to the boss of a mini-cab driver who sexually harassed you, or a shop assistant who was rude or aggressive to you, or a practice nurse who did something wrong which caused big problems for your or a child’s health, constitutes harassment in itself. Don’t be silly.

  164. Angela Kennedy said,

    The Lightening Process IS relevant here. Esther Crawley, who has been Wessely’s running mate in the ‘we’re being harassed’ campaign, is running a pilot study on the Lightening Process for children, called the SMILE study. The Lightening Process, which people here should know about if they have actually critiqued it, is extremely woo-ey, and what is more, dangerous to patients (that can be reasonably inferred for various reasons). They’re trying it on children, even though not been subject to trial on adults. Those mean harassing evul ME sufferers and supporters have objected to this to – shock horror! – Crawley’s university committee. Last summer, what was one of the examples of ‘harassment’ being claimed? Writing to ethics committees. Now it’s not clear if Wessely is talking about people writing to ethics committees about HIS work or other people’s, but what it does show is writing to ethics committees does not constitute harassment! But this seems to be escaping the reasoning and critical faculties of many, including those on the Bad Science threads (to the understandable frustration of people in the ME community).

  165. ChrisP said,

    Angela, asking someone’s boss for copies of their e-mails for use in a private dispute with someone else strikes me as being highly inappopriate. Your letters when your request was correctly denied show you to be a bully.

  166. Angela Kennedy said,

    Pipsqueak – get your facts right before you give in to the moral outrage. I said there were hundreds of examples of where patients given psychogenic explanations for their illnesses are characterised as illegitimate blame avoiders, and then I gave two examples, after explaining why I was concerned how quickly evidence was being demanded but not properly discussed, but subject to summarily dismissal.

  167. Angela Kennedy said,

    @ Mike Ward, the issue about the patient committing suicide is given in a link provided by Joe Kane. I reasonably assumed you had read it. Go and look at Joe Kane’s posts here.

  168. Angela Kennedy said,

    @ jdc and Mike Ward – when you start saying there is only a few people who are ‘bad ME community members’ (paraphrasing) but the rest are ok – you are potnetially insulting people here, treating them as trouble-makers or discgraceful distorters of the facts (both your terms here). Every one of us here posting and trying to show what the problems are with this whole ‘Wessely is being harassed by some big bad ME extremists’ meme is in danger of being constructed in those terms. Is that what you are intending? Or do you acknowledge that there are people here reasonably trying to explain to you what the problems are with that whole meme?

  169. Angela Kennedy said,

    @ Barney. You said this: “Kennedy’s “example” of Wessely “referring to people diagnosed with total allergy syndrome or multiple chemical sensitivity (don’t forget mostly by other doctors) on this occasion. But he (and most importantly others) have used similar language when talking about ME/CFS sufferers.” has been produced without citation or source, out of context and is of dubious value at best. ”

    Actually not true. I gave two examples of characterisation of ME patients as blame avoiders, which was what the subject was about.

  170. Angela Kennedy said,

    BTW – Is somebody here claiming the APA decision on Phil Parker and his Lightening Process as a result of Bad Sciencer intervention???!!??

  171. Angela Kennedy said,

    Chris P, your inability to retain the facts and tendency to run off with the wrong belief is astounding! I asked for confirmation that Wessely was not involved in the defamation against me on wikipedia, after Guy Chapman claimed otherwise! Not copies of emails. What a topsy-turvy world you live in, where someone who is the victim of an egregious libel is deemed ‘a bully’ for seeking to clear her name. You, my friend, are jumping the shark in your level of unreason here.

    Obviously that correspondence shows how Professor McGuffin was unable to confirm Wessely’s innocence in that libel against me. I’ve already said here Wessely should do the right thing and assert his innocence in that libel if that is the case, even if 5 years too late for me. What happened to me is a clear example of how these allegations of ‘harassment’ appear extremely unsafe.

  172. Wake up said,

    @ChrisP

    Asking for information is not considered inappropriate, however handing over private emails could be.

  173. Mike Ward said,

    Angela

    I said we had no details of the alleged suicide apart from an unsubstantiated allegation from the doctor. I do not think a link to a newspaper excerpt which mentions the allegation by the doctor counts as anything else but proof that an allegation was made.

    What was the result of the inquest? Presumably there was one.

  174. Andysnat said,

    Wakey Wakey said — “Asking for information is not considered inappropriate, however handing over private emails could be.”

    Angela K said, in a letter to KCL — ” I also
    request access to any communications between Professor Wessely and
    this person around this issue.”

    Harassment then, yes?

  175. ChrisP said,

    Angela, you specifically requested access to Simon Wessely’s e-mails from his superior. That is highly inappropriate. When your request was not acceded to you responded with veiled threats and complained to their superior. This behaviour marks you out as a bully.

  176. Mike Ward said,

    I wasn’t sure whether Angela’s letters could be construed as a form of harassment before but having seen them I can certainly understand why someone might feel that way. I am without doubt in my mind, however, that they are vexatious, time wasting and counter productive to her cause.

    By the way Angela, it does seem that in the case of the suicide you mention there is likely to have been an inquiry. See here:

    http://www.justice.gov.uk/downloads/burials-and-coroners/guide-charter-coroner.pdf#page10

    So I ask you one again whether you have any evidence to support your allegations.

  177. barney said,

    Post 169, twaddle, specific language, from Wessely is a prerequesit to justify your remark. Read the rubric, answer the question, stop obfuscating. There are dozens of people prepared to be shown to be wrong on this, but you appear incapable of providing evidence.

    How would you mark a student who made such a weak offering? I’d expect them to fail.

  178. Teacake said,

    On the subject of this suicide case:

    If the assertion made by the doctor concerned is that this patient committed suicide because the doctor could no longer prescribe for them, this assertion having no actual proof beyond the assertion itself, then there remain some problems with the conclusions people here have drawn.

    Let’s assume for a moment that she’s right, that the patient did indeed commit suicide because of the doctor’s loss of prescribing privileges. Why did she lose those privileges? Because (if I recall correctly) of some erroneous, misleading and dangerous advice she published on her website (about which Jones complained) and some irregularities in treatments she prescribed for a patient she had never met (about which the patient’s GP complained). Now, whose fault was it that there was erroneous, misleading and dangerous advice on her website? Whose fault was it that the erroneous, misleading and dangerous advice remained on the site until she was instructed to take it down? It’s clear that this was erroneous, misleading and dangerous advice because she was indeed instructed to take it down on this basis.

    So it seems to me that if any fault can be ascribed for the suicide (and it’s not at all clear that it can) then the fault can clearly only be ascribed to the doctor whose behaviour got her suspended in the first place, and resulted in a warning on her record, and not the person who quite rightly reported her for that behaviour.

    Or to put it another way, if I lose my ambulance driver’s job because of a drink-driving conviction, who is at fault for any harm that comes to my patients who don’t get delivered to hospital? Me, for losing my job? Or you, for phoning the police and telling them I’m driving under the influence?

  179. Teacake said,

    @Wake Up Post #159

    Props for lecturing jdc on what the subject of his own blog article is. That’s nice work, that.

  180. pipsqueak said,

    Hi Angela, thanks for getting back to me.
    I’m very happy to get my facts straight. In fact that’s why I’ve been consistently and politely asking you and your supporters for a single, properly referenced example to back up your claims.

    With all of these hundreds of examples that you have access to, it should be no great challenge for you to provide me with a single properly referenced example of Wessley being rude to or dismissive of CFS/ME patients, or describing them as illegitimate blame avoiders.

    Thanks in advance,
    Pipsqueak

  181. joe kane said,

    Here is the BSF cult and its warped moral system of values and warped world view for everyone to see.
    There is no evidence of harassment of Wessely or anyone else by sick and disabled patients. Even Crawley’s letter in the IoS uses an example that no-one in the right mind would claim to be harassment. Indeed, many would characterise the behaviour of the Wessely school of disability denial as a case of vexatious complaints and abuse against a vulnerable patient group. This is just another example of the upside-down ethics of the Wessely school where it is the doctors who get the sympathy and the patients who get the abuse.

    Yet here are the BSF cultists defending a stone-wall abuser and harasser of doctors and medical scientists who was a former member of their own internet cult and whose abuses are implicated in the suicide of a sick and vulnerable patient. But the evidence required to prove such BSF abuse is set far higher by BSF supporters than the standards they require to prove abuse by sick and disabled patients towards Wessely, Crawley and co..

    And the behaviour towards sick and disabled people by current anonymous BSF member andysnat is less than savoury, which many would describe as harassment and internet stalking. He can’t seem to leave a certain group of disabled patients and their internet support groups in peace. He even boasts about his snide comments to disabled support groups on BSF. Such are the amusements of small minds.

    So when are these champions of “good science” on BSF going to call out letter writer Crawley and her medical experiments on sick children based on the claims of faith healer Phil Parker that his magic can cure the sick and heal the lame? Or is this going to be the usual case of the Wessely school ethics in action, of giving all the sympathy to doctors practising quack anti-social pseudo-science, and accusing patients of harassment for daring to complain about such medical abuses?

  182. Teacake said,

    Okay, that one’s got to be a Poe. I mean, surely nobody is seriously going to post “Or is this going to be the usual case of the Wessely school ethics in action, of giving all the sympathy to doctors practising quack anti-social pseudo-science, and accusing patients of harassment for daring to complain about such medical abuses?” right underneath a screed pillorying Stuart Jones for daring to complain about a doctor practising pseudo-science. Are they? Really?

    So, own up. Who’s sock-puppeting joe kane?

  183. Angela Kennedy said,

    @ Mike Ward, the evidence of the allegations of the person’s suicide is the allegation that I referred to. If you are asking for evidentiary proof of all allegations – then by your own logic asking for evidentiary proof of the allegations of ‘harassment’ made by Simon Wessely is perfectly in order. You must therefore, by your own logic, be agnostic as to Simon Wessely’s allegations until they are publicly substantiated?

    @ Chris P and Mike Ward. Yes I do see I did ask for access to the contents of any emails Wessely and Chapman. I had genuinely forgotten. That request, however, does not constitute harassment. They ignored that request and it was in their power to refuse it. NO ‘harassment’ present. I was attempting to ascertain Wessely’s part in the libellous claims against me made by Guy Chapman on Wikipedia. If I had had enough money at the time I would have started a defamation/libel action. Unfortunately plaintiffs have to have a certain amount of money available to take legal action for defamation/libel.

    How either of you can claim that I, as a victim of libel, who is innocent of harassment, who dared ask for clarification of whether a public figure had taken part in that defamation, is either a bully, guilty of harassment or making ‘vexatious’ complaints, shows the level of unreason the groupthink on the Bad Science Forums have risen to. I put it to you that if it had been you who were victimised in this way, you would be overcome with outrage and would seek to do all you can to challenge that libel, including the possibility of legal action. Therefore you are both hypocrites. I also think you both show a high level of child-like naivety about defamation issues, which makes your certainty and arrogance in your pronouncements cringe-worthy. Your ideological comittment to Wessely as hero (and probably Chapman) means you are incapable of looking at this whole issue dispassionately and with critical analysis. You are basically working to the level of a pantomime audience.

  184. Angela Kennedy said,

    @ Teacake: Joe Kane has reasonably explained what is going on here – and your treating him as a sockpuppet and mocking him is basically something you’ve had to resort to to draw attention away from that. It’s an obvious tactic.

  185. Angela Kennedy said,

    Pipsqueak. I’ve provided the evidence as I told you in my previous post here to you. Anyone reading the thread will be able to see that. Or is there something else you think is missing? If there is, you should be able to tell me specifically. Your language here has gone a bit – well – vague.

  186. Andysnat said,

    Can anybody translate comment number 181 by Joe Kane into English for me? Please. It looks like it could be comedy genius, but I get all twisted up trying to follow his convolutions.

  187. Angela Kennedy said,

    @ Barney, post 177. The same as what I’ve said to Pipsqueak in post 185. But nice touch of sarcasm about my teaching duties! Aww – does it really rile you that I’m an academic? Bless.

  188. Andysnat said,

    And Angela, regarding your comment 185, you have done no such thing. Possibly because you cant, despite your protestations.

  189. Angela Kennedy said,

    Andysnat – my response to Chris P and Mike Ward applies to you. Your hypocrisy is just – well – ongoing. You go onto patient groups on facebook to crow at their concerns. What a prince.

  190. Angela Kennedy said,

    Andysnat is that the best you can do? Deny what’s there in front of you in vague terms? Regarding post 185 – do you even know what the subject is? I don’t think you do. Your vagueness gives it away. Your part in all this situation is akin to a particularly ineffectual chorus in the background going ‘rhubarb-rhubarb’ at a Greek tragedy.

  191. Mike Ward said,

    Angela

    My post (120) clearly refers to an unsubstantiated allegation by the doctor – why would I be asking for evidence that an allegation had been made?

    I have repeatedly asked about any inquest into this alleged suicide (which would probably be a matter of public record) or any other supporting evidence.

    If I was cynical I might look on this as an attempt at obfuscation

    Luv Mike

  192. Mike Ward said,

    You can also look at my posts 133, 173 and 176. These clarify that I am at not time asking for confirmation that an allegation by the doctor has been made but am in fact asking for supporting evidence that the alleged incident happened

  193. Wake up said,

    @Andysnat

    “Harassment then, yes?”

    Not in law, no.

  194. Wake up said,

    @Teacake

    Those discussing an issue set the topic.

  195. Teacake said,

    @Angela: “Joe Kane has reasonably explained what is going on here ”

    Um, no, he hasn’t. “Reasonable” and joe kane aren’t really on speaking terms. All he’s doing is repeating the same spittle-flecked rant.

    Also, Post #178.

  196. Angela Kennedy said,

    Mike – if you were being dispassionate and rational about this – you would understand that an allegation is an allegation. I’ve treated the allegation as possibly true. It was reported in the press, and. I’m given to understand it was reported at Stuart Jones’ misconduct hearing, yes? Or can you correct me on that?

    Your demand for evidence of full substantiation here, however, is in marked contrast to your taking of Simon Wessely et al’s claims of harassment, which you take at face value as true, despite the clear evidence that this is an unsafe position to take, as well as the complete lack of evidence, apart from allegations in various newspaper articles? Or am I wrong here? Are you agnostic about Wessely et al’s allegations? Do you see why they are unsafe and unsubstantiated, and why ME sufferers and their supporters are objecting to them?

  197. Teacake said,

    @Wake up

    “Those discussing an issue set the topic.”

    Translation: The topic is whatever Wake up says it is. Wake up is therefore always on topic because the topic is always Wake up’s. Even if it’s in the comments of an article on somebody’s blog, and the blog-writer himself makes a comment. I’m surprised you can reach the keyboard past your ego, champ.

    Those who smelt it, dealt it.

  198. Angela Kennedy said,

    ‘Those who smelt it – dealt it’. Heavyweight intellectual reasoning out in force I see. The ME community can rest well knowing their troubles will be solved by such arbiters of reason and good science.

  199. Teacake said,

    Just trying to find a level that you folks can work at. Obviously set the bar a bit high with, y’know, big words and all.

    So anyway, Angela, how you feel, being a member of the “BSF cult”?

  200. Jack said,

    I am cracking up here. Totally LOL y’all. ‘Smelt it dealt it’ that did it for me. In pieces. Sums up the substance of this thread! Thanks Teacake LOL

  201. barney said,

    post 187 @AK, you’re making stuff up again, if you’ve inferred sarcasm, I’d like to assure you that was a post entirely without irony.

    I don’t give a shit about your choice of career, but would like to see the question posed answered properly. An academic ought to be capable of that, particularly one so keen to claim authority on that basis.

  202. jdc325 said,

    @Wake up,

    @jdc325
    The doctor had complied.

    “I was subject to General Medical Council Interim Orders Panel Hearing on 29th April 2010, as a result of which pages had to be taken down from my website…” http://www.supportdrmyhill.co.uk/defence_document_issued.html

    Once again you are confused as to the discussion topic, which is the divertive tactics by those justifiably criticised for failing to use the scientific method. There is no evidence for your claims that the topic is anything else and therefore no consequences to speak of.

    You’ve cited an assertion from Dr Myhill that pages were taken down from her website as evidence to support your assertion that she had complied. If you look at the blog post I linked to earlier you will see that, contrary to the requirement that there be no content relating to vaccination (see the interim order, item 8f – PDF), Dr Myhill had statements on her website regarding vaccination. I linked to the relevant pages and to cached versions of them.

    Your quote from Myhill does not state that she fully complied or that all content that should have been removed was removed. If it did, it would be incorrect – as I have demonstrated. I’m afraid that the assertion from Myhill that you have cited to support your assertion does no such thing.

    Oh, and the original topic was exactly what I said it was – as you can see for yourself if you re-read the post. Claiming that your preferred derail is “the discussion topic” is a little odd.

  203. Wake up said,

    @jdc325
    Are you suggesting this is a lie?

    “I was subject to General Medical Council Interim Orders Panel Hearing on 29th April 2010, as a result of which pages had to be taken down from my website…” http://www.supportdrmyhill.co.uk/defence_document_issued.html

    The GMC had not investigated whether any of the reasons they imposed sanctions were justified. The doctor took steps to assist them even though they were vague and unspecific. There is no longer a case. It speaks for itself.

    The topic now appears to be the harassment of this doctor and no longer about the divertive tactics of those who do not use the scientific method or their supporters. Are you a supporter?

  204. barney said,

    But there is a warning. Until 2017, no?

  205. jdc325 said,

    @jdc325
    Are you suggesting this is a lie?

    “I was subject to General Medical Council Interim Orders Panel Hearing on 29th April 2010, as a result of which pages had to be taken down from my website…” http://www.supportdrmyhill.co.uk/defence_document_issued.html

    The GMC had not investigated whether any of the reasons they imposed sanctions were justified. The doctor took steps to assist them even though they were vague and unspecific. There is no longer a case. It speaks for itself.

    The topic now appears to be the harassment of this doctor and no longer about the divertive tactics of those who do not use the scientific method or their supporters. Are you a supporter?

    Did you read my comment before you posted your reply to it? Did you understand it?

    If so, you will have noted that I specifically pointed out that the wording of Myhill’s assertion did not support your own assertion (“Your quote from Myhill does not state that she fully complied or that all content that should have been removed was removed.”) – so why are you asking me whether I think it was a lie? It is clear that it does not need to be, as it never supported your assertion regarding compliance. Read your quote from Myhill again. Carefully. Compare it to your claim regarding compliance and the evidence I have provided regarding a failure to comply.

    Myhill does not claim to have complied fully or to have removed all content relating to vaccination (see 8f of the interim order). I have demonstrated that some of the content relating to vaccination was not removed. Your original claim was incorrect and your substantiation was no such thing.

    Whatever you think of the GMC’s failings, they do not support your case. The plain fact is that they required Myhill to remove content relating to vaccination (8f, interim order) and she did not remove it all (blog post linked to previously). Claiming the GMC’s reasons for the sanctions were not justified or that the GMC had not ensured they were does not prove that Myhill complied with them. Far from it. I have demonstrated that she did not and no amount of carping about the GMC can change that.

    Oh, and there is no longer a case – because Myhill was warned by the GMC. I suggest you look up the warning (it is available on the GMC’s website if you search for Sarah Myhill’s entry there). It makes for interesting reading. In fact, I would say it speaks for itself.

  206. joe kane said,

    So still no evidence of actual harassment has been produced by the BSF cultists because, apparently, they claim they can’t understand straightforward comments, never mind the subject of this blog article. They can understand legalise used in disciplinary hearings of one of their former cult members as well as scientific jargon though.

    When asked to explain why they support ethically abusive medical experiments by Crawley on sick children, who are being used as human guinea pigs to test the claims made by faith healer Phil Parker, they can’t understand that question either.

    And the actual real crimes of BSF cultists of harassing doctors, medical scientists and patients has been deflected into an irrelevant discussion of another individual who has no involvement whatsoever in the claims of the Wessely school that they are being harassed.

    And these people claim they aren’t in a cult.

  207. Angela Kennedy said,

    @ Barney – when you eventually find out what the question is that you think I’ve not answered and tell me, I’ll answer – though it looks like from this thread that I’d already answered the question, and you obviously don’t know what the question is [facepalm].

  208. Angela Kennedy said,

    @ barney – you really believe my job teaching students was something relevant for you to comment on here then? Why are you and others so obsessed with my job? Weird. Really weird.

  209. Angela Kennedy said,

    @ Teacake – if you are so worried about being seen as a cult member – try some critical analysis of the groupthink that’s going on over there on Bad Science on the ME/CFS threads. Your leader has just posted some passive-aggressive attack on ME sufferers and supporters on Twitter. Show you are free of the groupthink and tell him to stop waging war on a community, because that is what is happening. All this ‘bad ME people’ and ‘good ME people (if they agree with CBT/GET approaches only) construction is an attempt to divide and conquer a victimised community, and is completely divorced from any reasonably, dispassionate understanding of the ME community’s concerns, that you would expect from rational, critically analytical adherents to good science.

  210. Teacake said,

    @Angela – I’m concerned about this cult appellation chiefly because it is so clearly and obviously untrue, something that five minutes on that forum would surely make clear, that repeatedly stating the falsehood calls into question the person making the accusation. I can see only two reasons why one would repeatedly make the assertions that the Bad Science forum is a cult, and has the agenda being claimed here.

    First, the person could be making a mistake. If this is the case, it reflects poorly on that person’s ability to appraise evidence critically. The question asked of you – how does it feel for you to be a member of a cult? – is an illustration of the fallacy. You’re clearly no such thing, so how can the same accusation be levelled at other people who post on that forum? What gives you a free pass and not them?

    Secondly, the person could be aware that what they are saying is wrong, but they don’t feel any need to correct the falsehood.

    Being the generally positive person that I am, I would prefer to ascribe the description of Bad Science as a cult to a simple mistake rather than deliberate mendacity. But that does rather leave me with the conclusion that if the people posting such falsehoods can be so wrong about something that would take only five minutes to check, how can I trust their assertions on more complex issues?

    We can bounce backwards and forwards with all our demands for evidence and insults and such, and keep ourselves occupied for days, but we’re going to get nowhere unless we can all agree on a few basic starting points.

    For my part, I feel you guys need to accept that:

    1) Bad Science forum does not have an agenda for or against Wessely.
    2) We don’t have a group agenda on anything. We can’t even agree how a steak should be cooked, let alone the best method for handling a complex and difficult condition such as CFS/ME.
    3) We are not out to attack CFS/ME patients, or any other patients for that matter.
    4) Attacking your argument is not attacking you.
    5) Attacking the arguments of self-identified CFS/ME advocates is not attacking patients.

  211. firefly said,

    At no point has Stuart Jones been implicated in anyone’s suicide. That allegation should be retracted. Dr Myhill mentioned a patient of hers who committed suicide, but she said she didn’t know what the direct cause of the suicide was and she specifically said she didn’t know if it had any connection to anything Stuart Jones wrote. I have that in writing. People would be well advised to check sources before making such serious allegations.

  212. pipsqueak said,

    Hi Angela, thanks for replying again. I’m not sure what’s so difficult about my request. You seem adamant that Wessely has played a major role in setting up an atmosphere in which CFS/ME patients feel victimised. If this is true, it should be trivial to provide examples of him doing this: being nasty, dismissive of patients’ experiences, or calling them “illegitimate blame avoiders”

    You did indeed provide two such examples. But you did not provide full sources. It turned out that when Chris and Eleanor tracked down the sources for your claims, ithat Wessely’s words had been so misleading edited as to reverse their meaning.

    I have no idea whether you did the editing or simply copied the examples from a secondary source. Frankly, I don’t care which, but if I caught a first year undergrad doing either of these, they would receive a short sharp lesson in basic scholarship. Given that you seem so anxious to claim the mantle of academic, this should be trivially obvious to you.

    Given that the two unsourced examples that you gave turned out to be unsupported, perhaps you can give me an example that does support your claims about the malign activities of Wessely. This time, could you please provide the original source so that we can see Wessely’s words in context. I don’t care if this example comes from a scientific paper or an informal presentation, but we do need to see the proper context.

  213. barney said,

    @AK, Your response to the question posed was “But – a few examples: Wessely (1990: 92) argues that the attribution of ME to infection is related to “a decline in the acceptance of personal responsibility for illness” and that such attribution conveys benefits such as “an avoidance of guilt and blame”, claiming guilt and self-blame have been found usually absent in “chronic fatigue patients”. ”

    This appears to be a fabricated quotation, you have yet provide a context and citation so that we may ensure you are not misrepresenting him. You surely understand this concern, given what’s been offered so far.

    Meh. The passing reference I made to your profession was merely to highlight that you surely *must* have the ability to provide such things, doing so being a fairly fundamental skil for your job ‘nall. After all, you “do have a reputation that might be damaged” by acting like a bit of a numpty.

    A straightforward fulfillment of the repeated requests would probably tie off one of the longer long running strands of this discussion.

  214. Angela Kennedy said,

    @ teacake: the evidence shows your comments here to be naive at best – and I therefore am having to give you the benefit of the doubt and assume it is not mendacity on your part, just a lack of understanding. And here’s why:

    1. There has been a relentless attack on key people associated with the ME community over a number of years. I myself have been subject to periodic snarky attacks on those ME/CFS threads, long before my recent foray into the forum.

    2, As soon as anyone DARES object to those attacks on people, they are mobbed by ad hominem from various other members. They are marginalised, and none of the BS ‘regulars’ object to that in any way. The moderators are happy to let that happen, and indeed sometimes take part.

    3. If there really was no reactionary groupthink on Bad Science, one could have reasonably expected a completely different treatment even of me on there, or at least a large number of people saying things to the effect of “stop having a go at her, stop treating her as suspect, give her a chance to make her argument.” There would even have been genuine interest in my book, for example. One person said they’d not posted for fear of overwhelming me. That was it.

    4. Almost to a person, those making comments as Bad Sciencers make the same prejudicial assumptions about the illness itself and about those who object to psychogenic explanations for it. There is hardly any dissent. That rings alarm bells. I also note you have not seen fit to criticise Goldacre for his latest display of passive-aggressive attack on community members, for example. I’ll be very surprised if any of you do.

    5. The only ME sufferers tolerated on there are those who toe a party line (Wessely hero – Myhill evil, CBT/GET goooood, for just some examples), usually having to denounce other ME community members as well to be accepted.

    So expecting those of us who are victim to that sort of groupthink to believe there is no group agenda is just not feasible. The evidence indicates otherwise at the very least. The evidence shows that there are many of you out to attack ME sufferers and the people who support them. The evidence shows ‘you’, collectively (you are using the royal ‘we’ here yourself so I’m answering in kind), to have a double standard in how you treat evidence, what you see as bad behaviour etc. And the fact you presume to tell me I or other people you don’t agree with here don’t know the difference between attacking an argument and attacking the person is perhaps the most implausible of your demands here. I know FULL WELL the difference, and I brought it to people’s attention there. You really believe there has been no ad hominem against me, Sarah Myhill, the charity Invest in ME, the Countess of Mar, as just a few recent examples? Really? That is terrifying.

    (Short disclaimer : I am no groupie of either Myhill or Mar. My point in mentioning them is to show the double standards on display here.)

  215. Angela Kennedy said,

    @ firefly. Myhill gave evidence at Jones’ hearing about the suicide, did she not? That is a serious allegation made at a hearing and reported in a newspaper. Yes? The Wessely et allegations of harassment are also serious, and they have actually been shown time and time again to be unsafe. I’m therefore expecting you to be calling for their retraction, including by those on Bad Science repeating them, post haste. You know- because you don’t have double standards or anything.

  216. Angela Kennedy said,

    @ Pipsqueak. Sigh. Firstly, I see you are going for the moral outrage about someone not immediately providing the full reference of the quotes she gave. How sanctimonious of you. As is clear from that thread, demands for ‘evidence’ and information from me without actually engaging with them except on the most superficial dismissive level was happening. I was also being subject to immediate, hostile engagement. Being overwhelmed did mean I’d not immediately given full references, yes. Obviously someone, who is physically overwhelmed by copious hostile posts demanding information and then attacking her for not doing it quickly, who fails to give immediate full references, and the original paper to boot as you’ve demanded below’ is a real villain. That’s sarcasm by the way.

    But still – two people did very quickly give the full references – which showed there was absolutely NO misrepresentation on my part of them. They DID show the (what I assert as recurring) theme of constructing ME sufferers as blame avoiders! So I am afraid when you say this – ” It turned out that when Chris and Eleanor tracked down the sources for your claims, ithat Wessely’s words had been so misleading edited as to reverse their meaning” – you are telling a big, fat lie, possibly to yourself, in order to help you cope with your cognitive dissonance.

    So your sanctimonious lecture of what you would do to a student comes from a misrepresentation of the facts. That is worrying.

    If you believe I am misrepresenting ‘Wessely’s words’ (I see you ignore the fact I am NOT focusing on Wessely, as I keep saying!), go find the original source and SHOW how. I have no duty to provide you all with pdf after pdf that might break copyright agreements or are publicly inaccessible (you didn’t know about that maybe?). Go do some work yourself. Read my book – and then make a reasonable argument against my points there if you think you have one.

  217. Angela Kennedy said,

    @ Barney – I really think a lot of you people on Bad Science do not understand referencing in academic literature. If you look at the original ‘Wessely’ paper, I have not misquoted or fabricated anything there. You DO know what the original source is because, although I didn’t give it immediately, someone else did. Again – the ‘egregious’ thing I did was not give immediate references because I was under physical pressure from the constant hostile attack from about 10 of you on there, making demands interspersed with ad hominem.

    Your claim I have ‘fabricated’ is merely an allegation and an untrue one at that. Anyone who looks at the original reference will see I am accurate in what I have said. He writes the words I quote! They are not quoted out of context either. The ‘repeated requests’ are for something already fulfilled, so I have to conclude you are either being dense, or disingenuous, in your outrage here. And this repeated focus on my not giving immediate full reference is an obvious straw man.Your use of the word numpty here is ironic in the circumstances.

    By the way, I do have other examples of that characterisation of patients given psychogenic explanations for their illnesses as blame avoiders in my book. There were so many to choose from that I had to limit my choices of which to use due to word limit. Obviously that upsets you, but your desperate attempt to cure your own cognitive dissonance cannot change what is there.

  218. ChrisP said,

    Angela Kennedy,

    I think we need to be quite clear about a few things, because it is clear you are not above twisting what has been written to your own ends.

    1. I don’t see any ‘attacks’ on you on the Bad Science threads. I have seen comment about your behaviour on the forum, I have seen posters asking you for evidence for the assertions you have made, I have seen comments made about your activities elsewhere on the web and about letters you have posted on the web. So in order for us to be quite clear what you are talking about, you need to positively identify these ‘attacks’.

    2. I have seen no ad hominem regarding you. Again you need to identify these so we can be sure what it is you were talking about. The one you claimed on the Bad Science Forum was not an ad hominem.

    3. The problem you had on the Bad Science forum was your failure to support your claims with evidence. Even when asked specifically. When you did finally produce some ‘evidence’ it was not sufficiently well referenced for it to be easily found and when identified did not support your claims. Members of the forum are very critical of un-evidenced assertions from anyone.

    4. It seems you have made up views for members of the Bad Science Forum to hold about the causes and treatment of CFS. There are a variety of views as to the cause, but many who have looked at the research would conclude that ruling out a psychogenic aspect to the condition is wrong. The criticism of those who claim there cannot be a psychogenic component is common, because such a stance is not based on evidence. I see you have also managed to slip a tu quoque fallacy in there.

    5. I can’t talk for the opinions of the CFS patients, but you will find the arguments about Simon Wessely’s views are far from one-sided. Sarah Myhill is rightly criticised for a) the incorrect, and potentially dangerous, medical advice that is on her website and b) her execrable publications on mitochondrial disorder.

    6. Angela, the only thing you have been the ‘victim’ of on the Bad Science Forum is your own poor arguments and failure to provide evidence to support them. It no doubt has left many posters with a fairly jaundiced view of your critical thinking abilities.

  219. Firefly said,

    @AK – Yes Myhill gave evidence at Jones’s hearing. As I said before, she mentioned a patient who had committed suicide, but said she didn’t know what had caused that. The newspaper article is wrong. It is quite easy to check original sources for this kind of thing before making serious and inaccurate allegations, but I’m sure you know that, as an academic.

  220. Angela Kennedy said,

    @ firefly – present the evidence then of your claim, please.

  221. Angela Kennedy said,

    @ Chris, all I’m getting from you – and some others here, is a repeated diatribe of the same old stuff: an exaggerated moral outrage over my failure to immediately include full bibliographical details of two quotes I gave, but which I did say in the same post I would give if people wanted them. I have already explained that I was under duress at the time from the vast amount of attacks I was getting at once. But that means your exaggerated outrage is unjustified, so I can see why you are maintaining it while ignoring the actual facts of the matter. Hell – how are you going to keep treating me as suspect when the evidence shows I’ve behaved reasonably?

    I don’t think you would know a tu quoque fallacy if it bit you on the nose. You don’t even know how to avoid making ad hominem fallacies, or what they actually are!

    The evidence shows that you and others, the vast majority on the ME/CFS threads, are committed to psychogenic explanations for ME/CFS. You ontologically gerrymander the arguments to promote those explanations wherever possible. If you (and others) were not being partisan, you really would not have treated me with the immediate hostility you did, as just one example. Instead you would be interested in what my arguments are. The mob hostility itself which prevented me from explaining what my arguments are showed a partisan perspective. At least be honest about where you are coming from. You are clearly NOT neutral on the matter. That would not be a problem – one of the key methodological concerns of social science, for example, is reflexivity and acknowledging the ‘view from somewhere’, and I discuss this in my book. It’s the pretence to neutrality and objectivity while promoting a partisan position, that you and others do on there, that is repugnant.

    Sadly I have read both Wessely and his colleagues, and those who believe similarly, extensively, and I can confidently say he and they promote an explanation for ME/CFS that is fallacious, not based on solid scientific knowledge, and dangerous to patients in various ways. That is enough reason for me to be perceived as a threat to your worldview, and that explains your determination to trash my reputation, rather than deal with my argument and the evidence to support my assertions.

  222. Angela Kennedy said,

    P.S. Firefly. Have you written to the journalist concerned to explain they have misquoted the hearing details? Do you have the transcript of the hearing that shows the journo misquoted them and that what you say is correct? Is the transcript of the hearing on a public URL? Can you point to the exact place it shows the journo misquoted the suicide details?

    After all, you are saying “It is quite easy to check original sources for this kind of thing before making serious and inaccurate allegations, but I’m sure you know that, as an academic.” It should be easy for you to provide those details then.

  223. barney said,

    @AK. Oh dear. I haven’t claimed it *is* a fabrication. I’ve stated it *appears* to be a fabrication. Do try not to misrepresent people; it’s rather an annoying habit you seem to have.

    I’ll tell you what, how about you provide the whole paragraph for (each of the) quotation(s), rather than just copy/paste from a website (heh, or your book) interspersed with your own words.

    “, those making comments as Bad Sciencers make the same prejudicial assumptions about the illness itself and about those who object to psychogenic explanations for it. There is hardly any dissent. That rings alarm bells. I also note you have not seen fit to criticise Goldacre for his latest display of passive-aggressive attack on community members, for example. I’ll be very surprised if any of you do.”

    Is utter bullshit. But for your own deeply rooted prejudices you’d be aware that ttbomk no one on the forum makes assumptions about the illness. There is credibilitywrecking paranoia evident in your conspiracy-theory witterings about people acting in bad faith, agenda pushing and group think.

  224. Angela Kennedy said,

    @ barney. Your silly snipes aside, you clearly do not know about academic referencing.

    Firstly, if I were to provide full paragraphs for every quote I used, the amount of wordage I would have to provide would be completely unwieldly. Indeed, this would be the case for every person who has ever written a book, or an article! You are exhibiting a special pleading to those who you are hostile towards, because you sure as hell don’t do this to all those who you are NOT hostile towards! All the quotes and partial snippets of info used on Bad Science that pass by without objection, when they are made by those of whom you approve, is testament to that. You are not alone in that either.

    Secondly, even a paragraph is often not enough to get the full context of a quote and how it is being used, by ANYONE who writes a book, book chapter, article or paper. The paragraph is quite arbitrary an amount to be quoting in that respect.

    I’m not sure if this is cynical ontological gerrymandering on your part, or mere ignorance about how evidence is referenced in academic work. But you do seem to share that odd way of looking at things with a good few others on the Bad Science forum. You want the impossible, and if that can’t be met, you claim an intellectual triumph that you certainly don’t deserve.

  225. Mike Ward said,

    Angela

    I am going to assume that one of Doctor Myhill’s patients did in fact kill themselves (I don’t think her worst enemies would accuse her of fabricating that). However, the only evidence for this is Dr Myhill’s own statement – the suicide itself wasnt reported in connection with Dr Myhill, only her allegation that her suspension was to blame for a patients death.

    A suicide would require an inquest I believe. On matters of public health it is the coroner’s job to assess the details. Unless you expect me just to take Sarah Myhill’s word for it I would like a little more supporting evidence for the claim that the GMC suspension was the salient factor. It is an extraordinary claim – especially when taking into account the advice given to the media about oversimplified explanations for suicide and that it is rarely as simple as “a causes b”

    I also think post 178 by Teacake gives a very reasonable point of view on this.

  226. Angela Kennedy said,

    I should say, again, that I did show Chris Preston why his claims that Mar had deliberately taken something out of context that Wessely had written were not safe claims for him to make. Looking at the further paragraphs – Wessely and colleague were justifying their claim, but Mar was not misrepresenting it – never mind deliberately! Something else that got lost in the mosh pit by the looks of it. If it’s inconvenient to your beliefs, knock it out of sight, appears to be the default action on the BS ME/CFS threads.

  227. Mike Ward said,

    Oh and Angela

    Am I guilty of double standards – of not applying the same requirements for evidence to Wessely claims? Not really, because for a start he isn’t making extraordinary claims

    The most extreme allegation by Wessely is that he has received death threats. We know that some of his opponents have absolutely no problem at all with the fact he may have received death threats and think he deserves them.

    It does not take a huge suspension of disbelief to accept therefore that an over enthusiastic opponent went to the small extra step of actually sending him one. Why hasn’t he produced evidence? He is probably acting on police advice – especially if the threat was made anonymously (which I would imagine is typical)

    I am prepared to accept the thrust of Wessely’s allegations (although do not necessarily agree with every detail or interpretation). If further evidence comes to light I may change my mind.

  228. Angela Kennedy said,

    @ Mike Ward, let’s get this clear again. I’m no ‘groupie’ of Sarah Myhill, and I am not here to defend her (though neither am I here to attack her). As far as I know, the suicide and its alleged context was reported at Jones’ hearing for professional misconduct and reported as such by the journalist, yes? Or can you correct me on that with specific transcript details?

    So my answer to firefly is the same to you. I’m discussing something (basically the double standards you are applying to the notion that a report to the GMC constitutes ‘harassment’ – which I’ve noticed you’ve sidestepped, again) based on the EVIDENCE AVAILABLE (heard of that before?) If you have evidence that shows to the contrary of that available evidence, please do share.

  229. Angela Kennedy said,

    Ok Mike – we get it, you believe Wessely with all your heart and refuse to accept he is making extraordinary and unsafe claims, and no evidence to the contrary will sway you. It’s become pretty clear anyway that was your ideological position.

  230. Firefly said,

    @Angela Eh? I’m not the one making a claim. I’m refuting a claim. The onus is not on me to produce evidence. But to save you some time, yes I have the transcript. No unfortunately it’s not on a public url otherwise I would have linked to that. Here’s what is said (on oath, talking about the GMC, continuing despite being interrupted to try to move things on because no question had been asked about the GMC case and it wasn’t considered relevant):

    “…there was one patient in particular who thought because I had been suspended I could no longer could be consulted. I don’t know if this happened directly as a result of that but the man deteriorated and he actually committed suicide.”

    So one patient sadly died. Possibly in the period of time she was suspended by the GMC, but that isn’t clear. The cause isn’t known. It seems he may have misunderstood the GMC ruling anyway. No evidence it was actually linked to the GMC decision (obviously he could have seen another doctor). No link to anything Stuart Jones said. No link to the Bad Science Forum.

    I personally think the incorrect way the newspaper article is written (I have checked the original article by the way, not just a website copy, and no there isn’t a url for that either) has the effect of creating a worse impression of Dr Myhill, but I think it would be up to her to complain if she was not happy with that.

  231. Mike Ward said,

    It was reported by a journalist as having come out of Sarah Myhills mouth. If that is the only evidence available I think it is one hell of a jump to say that the GMC suspension was a salient factor and even if it were to be there are other potential interpretations (see post 178 by tea cake)

    The evidence we have available is that some of Wessely’s opponents think it is perfectly acceptable to send Wessely death threats. It is no great stretch to accept that some may have done so. I think your most ardent supporters would agree it would not be surprising

  232. Mike Ward said,

    Angela – post 229 really is bullshit and you should be ashamed of yourself

  233. Teacake said,

    Dear Angela

    I’m quite prepared to carry on this discussion, but there doesn’t seem a great deal of point if we can not find any common ground on which to start a rational exchange of views. We differ fundamentally on so many points – your treatment on the Bad Science forum, which you categorise as hostile, your belief that we all operate from a brief that is supportive of Wessely’s views, your belief that I should be condemning my “leader” Ben Goldacre, your use of terms such as “ad hominem” and “straw man”, my belief that Bad Science is not out to get CFS/ME sufferers.

    I have tried, further up in these comments, to find some sort of common ground with you, and you have simply called me either naive or a liar. So I’ll make another attempt. I may be naive to think I might be able to get some sort of reasonable discussion with you, but here goes anyway.

    1) People on the Bad Science have not been making a “relentless attack” on people related to the CFS/ME community. People there will criticise what they see as poor research or dangerous practice, but your accusations of groupthink, of prejudice, are really rather unfair.

    2) People on the forum reacted the way they did because you pitched up with a pre-emptively pretty hostile attitude from the start and because you didn’t back up your assertions. You claim now to have done so; people far more clever than me have pointed out that the references they looked up on your behalf don’t, in their view, support your argument.

    3) We haven’t got a brief for or against Wessely. Personally, I don’t have a view on the causes or possible treatments for CFS/ME, or Wessely’s position within it. All I’m seeing at the moment is a lack of proof on how terrible he is. The quotes I’ve seen supposedly of him dismissing, or abusing sufferers, don’t in any way support those assertions. None of this means I support him, or think he’s amazing.

    4) Ben Goldacre is not my leader. I have nothing to do with him and he has nothing to do with me. My only (very tenuous) connection with him is that I frequent a web forum he originally set up, but which he now has nothing to do with. I don’t feel I should be expected to condemn or support his actions any more than you, as a poster on that forum, should be expected to.

    5) You seem to be operating on different terminology than I am used to; in particular your definitions of what constitutes ad hom, or straw man arguments are not ones I recognise or have seen used anywhere else. This discussion is going to go very slowly, I suspect, because if we can’t agree on the definitions of phrases, how are we going to get to the interesting discussion of our different viewpoints?

    Now, I still believe, naively perhaps, that there is an interesting discussion to be had here, and that I could well learn something from you. But for that to happen, you’re going to need to accept some basis of my position; that I’m not out to abuse you, and that I’m not some blinkered Wessely supporter, and that I’m not, as your claims would appear to be suggesting, acting in bad faith.

  234. barney said,

    Just for lolz now, are you really suggesting that producing the paragraphs from which your attribution to Wessely was made would be impossible?You’ve posted a little over a dozen words mixed with your own and claim producing the paragraph for context would make it unweildy? This would lend considerable weight to the “fabricated quotation” hypothesis.

    The rest…well, back on to tu quoque again.

  235. Angela Kennedy said,

    @ firefly, so after rebuking me for not finding the ‘absolute source’ of something, you now admit that wasn’t publicly available in the first place? I’m now to accept some hostile anonymous has a privileged access to a document that reveals ‘the truth’, AND be rebuked for not having that privileged access? Wow.

  236. Angela Kennedy said,

    Mike – I’m afraid having seen you perform you have no credibility. You do everything you can to ignore inconvenient facts laid before you and maintain your ideologically-informed belief system in the face of them. You know Wessely’s claims of harassment are ‘extraordinary’ and you have the evidence that they are not safe claims for various reasons. You just choose to ignore your own cognitive dissonance.

  237. Angela Kennedy said,

    Barney – you are not even making sense now. You clearly do not understand how points and quotes are summarised in papers and books. Come back to me when you have learned. No matter how many times you say it, the comments in the quotes I gave are in the reference (to the page number), and they are not out of context. You are just flinging crap now in the hope it will stick and your bad faith is palpable.

  238. Mike Ward said,

    I’m trying to figure out whether what we are seeing is dishonesty or Dunning Kruger on a grand scale

  239. barney said,

    @AK, sooo…notwithstanding the fact that a number of more recent statements by Wessely do not support (contradict, even) your single attributed frankenquote, and you are refusing point blank as impossible, no less, to quote the full context in order to show that you’re not misrepresenting him (from a paper over two decades old, btw) you still think denying you’ve provided evidence to support your aforementioned statement about him is a sustainable. Lordy.

    As to palpable bad faith, what, pray tell, possible reason would I have for bad faith? In your own words, please do take your time.

  240. barney said,

    above, strike a before sustainable, and sustainable should be UNsustainable. Doh.

  241. Firefly said,

    Angela- the info IS publicly available, just not online. I have no more right to access a transcript than anyone else.

  242. Angela Kennedy said,

    @ Teacake – I don’t see any common ground between us. You don’t understand mine and others reasonable objections to how ME sufferers are treated as patients, and their advocates treated as suspect by Bad Sciencers among others. I believe you are uncritical of the problems I and others have identified. I don’t know what your understanding of the ad hominem fallacy comes from, but I don’t believe you know it when you see it. Your loyalty to Bad Science seems to override your ability to think critically, and so on. You will excuse bad behaviour by fellow forumites who share your views to the bitter end it seems. I’ve tried and tried to maintain good faith in my arguments but that is falling on stony ground. Snarky attempts at discrediting people who dare object to psychogenic explanations and their consequences, is the default approach of the Bad Science coterie on the ME/CFS threads. It’s shocking to witness that level of bad faith in people claiming superior knowledge in scientific method and rational thinking. But BS is notorious for that, and with Goldacre’s little passive aggressive tweets your collective reputation is embedding itself into public conscisousness :(

  243. Angela Kennedy said,

    @ Firefly, so where am I supposed to travel and pore over a transcript before I am allowed to take a newspaper report at reasonable face value until shown otherwise and make ONE comment about a situation?

  244. Angela Kennedy said,

    Barney you are just making stuff up now. You cannot back up what you’ve just said – you have no evidence to support that wild claim. You don’t even know about academic referencing, and as usual you apply the double standard. Obviously an agenda pusher, even if an ignorant one.

  245. Angela Kennedy said,

    Mike Ward – your invocation of Duning-Kruger’s tentative paper shows how truly ignorant of what that paper was actually demonstrating you are. The appeal to ‘Duning-Kruger effect’ is the refuge of those who use insult in place of nuanced discussion to advance their position. Anyone who actually knows that paper and has read it carefully and repeatedly, as I have, will be laughing at you. Next you’ll be invoking ‘Occam’s razor’ without knowing what that actually means either.

  246. Mike Ward said,

    So Angela do you accept that some of Wessely opponents are perfectly happy if he receives death threats?

  247. Teacake said,

    Angela, I would understand and consider as reasonable objections to how ME sufferers are treated, if I could see clear evidence that they really are being systematically treated in the way you claim. Instead, all I am seeing wherever this is discussed is wild accusation and statements being wilfully or ignorantly misinterpreted to mean something they clearly don’t, just as you are wilfully or ignorantly misinterpreting the motives and statements of people on the Bad Science forum.

    I have made two attempts to find some common ground on which to discuss these issues with you. I now conclude from your rebuffs that you are either unable or unwilling to seek that common ground.

    I confess that I am much less patient than some of my colleagues. Pipsqueak, for example, who you have taken to calling a liar, is not only far more clever than me, she is also, in my experience, almost unfailingly polite and patient. Sorry to say, I am not. I try, but I am not, and I think I’ve had enough of trying.

    Since you don’t appear to want to have a rational discussion on these important issues, this seems really to go no further as far as I can see, beyond the thin satisfaction to be had from poking holes in your absolutely vapid arguments, a task which is about as challenging as shooting fish in a barrel. Thank you for your contributions, they have been priceless, by which I mean that it is impossible to assign them a value.

  248. Opti said,

    Fuck me, I take a flight to San Francisco and I miss all the fun. Today I have brain fog, post-exertional malaise, my body aches everywhere, I think the lymph nodes in my neck are swollen and if I hadn’t had a flu jab I’d swear that I was coming down with flu (Hey, I wonder if that flu jab overloaded my immune sustem and caused all this).

    But you know what? I’ll bet a pound to a penny that the sky won’t fall in, that the techniques that I’ve learnt using, yes, CBT and GET, mean that at some point in the next week or so I’ll have some sort of life to enjoy.

    Then again, according to some I haven’t got
    ‘proper’ ME.
    Well, whoopy fucking do, if I’m going to feel shit I’d rather do it here.

    Opti.

  249. barney said,

    @AK, I’ve made no wild claim. You are the person making bold, unsupported assertions about Wessely’s views; support them, with direct statements by him (you’ve said there are many, many of them). Or shut up.

    Perhaps you’d like to highlight which statement I can’t support; or shut up.

    Unlike you, whose agendas swing from being some kind of outspoken advocate for myths, to promoting a vanity publication, I can offer assurance without fear of contradiction that I have no agenda, hidden or otherwise (beyond, “like, WOW” but I don’t think that really counts). Perhaps you’d like to explain what you think my agenda is, or shut up.

    Please explain or give some examples of my acting in “bad faith”. Or shut up.

  250. barney said,

    Actually Angela, don’t even bother replying; if your views are so set in stone and absolute that a request for evidence sends you squealing from the conversation it’s really not worth my engaging.

    Continue peddling your intellectually bankrupt myths and I’ll just hope that you don’t cause too much damage to CFS sufferers whilst you’re riding your ego. Hopefully the rest of the world will move on with seeking cause, treatments and cure for the illness, in its myriad forms, be they bio- or psychological.

  251. Angela Kennedy said,

    @ Mike Ward. No. ‘Perfectly happy’? What next, ‘delighted’? Some people ( a very few) seem to think he deserves it, a view I do not share in any way. There are many responses to these claims in the ME community – the vast majority legitimately troubled by two things, as I’ve already highlighted here:

    1. The fact the claims of death threats are unclear, unsubstantiated and unsafe as they are being reported in the press (the only public information sources available – to me or you!) For just one example, by their logic, David Cameron is guilty of making death threats to the rioters last years.

    2. That reasonable, legitimate forms of action are being falsely deemed as ‘harassment’.

    These make two elephants in the room, and you ‘Bad Sciencers’ keep sidestepping that issue.

  252. Angela Kennedy said,

    @ Teacake – I think it may have escaped your notice that I am not being given a chance to further discuss what my own concerns are about the way ME/CFS sufferers are treated, here or on the Bad Science forum. I think you are so cosy in your relationships on Bad Science (Ooh – isn’t the anonymous pipsqueak clever!) that you fail to see when they are acting like – well I’m not going to mince words – dickheads. Furthermore you are too close to see the collective ideology being propagated on those ME/CFS threads. You are basically not being critically analytical – which is why I’m finding your preaching style annoying. If you want to make common ground – you need to stop preaching and ask me, honestly and without prejudice, what my concerns actually are, and what others in the community are concerned about. Need to make sure you know – I’m not an ME sufferer, I’m a supporter.

  253. ChrisP said,

    Angela Kennedy, I am afraid that insisting someone’s boss to provide you with access to the contents of their personal e-mails cannot be considered normal.

  254. Angela Kennedy said,

    Barney – I’ve already showed you time and time again you are talking rubbish. You just aren’t letting your tirades be inconvenienced by the facts. However I might have to revise my accusation here – it might be that you are just ignorant of the actual facts and too stupid to realise it, rather than acting in deliberate bad faith. It’s always hard to know which is in place when people act like dickheads.

    It’s clear that I have not misrepresented Wessely on this thread or elsewhere. i have argued, and demonstrated that Mar has not either, and certainly not deliberately, Chri Pretson’s accusation. One of the ‘Bad Science’ current campaigns against advocates who dare object to CBT/GET (as opposed to the Opt-mystics of this world who support them) and the flawed reasoning behind these ‘treatments’ for ME/CFS is to accuse them of harassing and misrepresenting Wessely. But to do this you have to make ridiculously unreasonable demands with the citing of sources and what is written in those works, which is what you have been doing, for example, though you are not alone in that respect.

    I have tried to explain to you here the problems with that. But you are not listening. To help keep your reactionary worldview intact you have to demand something that’s not possible, let alone reasonable: academic quotes that get longer and longer, encompassing whole paragraphs, then whole articles, then more than one article, then anthologies etc. all presented to you so you don’t have to do any work yourself.

    This is a different situation, of course, to the likes of firefly – who has demanded someone source something not publicly available, it looks like, before they take a newspaper reported fact as reasonably accurate.

    Ironically, all of Simon Wessely’s words as being reported in the press are being taken at face value, even though it is easy to show where they are unreliable.

    There comes a point when a collective bad faith on the part of the vast majority of Bad Sciencers posting in the ME/CFS threads there, and here, looks like the most likely scenario.

  255. Angela Kennedy said,

    @ Chris P. Something not being ‘normal’ (in your subjective belief system) does not constitute harassment. The situation was extraordinary. Some twit on wikipedia made false allegations of personal harassment against Wessely and directly implicated Wessely in those accusations. Wessely is supposed to have told Guy Chapman that I ‘personally harassed him’ (among alleged others).

    As this allegation of personal harassment on my part is an untruth and I was being libelled, my only reasonable course of action was to ask Wessely’s employer for the information I did. And as I have said before, all Wessely had to do was confirm in writing through his boss that he was not part of that libel, that there is NO email or telephone conversation, or other form of communication, where Wessely tells Guy Chapman I have personally harassed him, Wessely.

    The fact his has NOT happened should raise alarm bells for rational people, and adds to the problems with Wessely and others claims about ‘teh evul ME extweeeeeemists’. You, on the other hand, choose to sidestep that in favour of a moral outrage against someone seeking to clear their name of false accusations.

  256. ChrisP said,

    Sorry, Angela I don’t accept your extraordinary explanation for your behaviour. If contacted my immediate superiors on several occasions demanding to see the content of all the e-mails I had sent to a third party, I would consider that to be harassment.

    As for the Countess of Mar, she more than once made claims that phrases and sentences written by Simon Wessely were referring to CFS patients, when they clearly did not. In this the Countess was misleading. There is simply no other word for it. The fact that you think doing this is not a problem causes me to worry about your commitment to accuracy.

  257. Mike Ward said,

    Angela, due to the ambiguity of the word “harassment” (is it being used in its everyday sense or the criminal sense?) I would personally try and avoid its use when referring to your letters to Wessely’s boss.

    I have no doubt that the word vexatious” fits the bill brilliantly.

    When a couple of posters here referred to letters of complaint to someone’s boss as being harassment I thought you may have a point when you defended yourself. Having now read the letters I now think they have a point.

    Here are the letters so people can reach their own decision

    http://cfs-facts.blogspot.com.au/2008/02/wessely-and-harassment.html

  258. Angela Kennedy said,

    @ Chris Preston. You don’t accept my explanation because it mires you in cognitive dissonance. For whatever (hidden) reason, your agenda is to present advocates such as myself and the Countess of Mar (whom I often disagree fundamentally with and have cause to critique) as bad people, as extremists. The fact you have not been able to substantiate your claims, and that a rational analysis of the facts available show your claims to be untenable, means the only way you can deal is to just keep repeating those untenable claims in the face of the evidence showing you are incorrect. The key issue here is that I showed how your claims were not safe.

  259. sigh said,

    @ Angela Kennedy

    The fact you have not been able to substantiate your claims, and that a rational analysis of the facts available show your claims to be untenable, means the only way you can deal is to just keep repeating those untenable claims in the face of the evidence showing you are incorrect.

  260. Angela Kennedy said,

    @ Mike Ward. The word ‘harassment’ was used by Guy Chapman, who said Simon Wessely told him he’d been ‘personally harassed’ by me and others. So no, the word isn’t vexatious, it is harassment, but it is not my use, it’s Chapman’s and Wessely’s (Wessely’s being definitely the case latterly, and possibly earlier with regard to Chapman).

    I do not believe for one moment you had any open mind as to whether I was reasonable in asking for confirmation that Wessely had not been involved in libel against me. Your behaviour has always showed a committment to campaigning against ME advocates who object to CBT/GET and the psychogenic explanations promoting those ‘treatments’.

    As for you giving the letters ‘so people can reach their own decision’ – let us not forget that those letters were put out in the public domain BY ME. I am the one who has made those letters public.

    But, I’m going to bite on this one. Please give us all the benefit of your exposition on the different uses of the word ‘harass’, and how Guy Chapman in particular was using the term when he said: “”These individuals have also harassed Wessely in real life. That we
    can’t include because it’s not directly stated in the sources, but I
    have now exchanged emails with Wessely and it is the case. (Guy)
    15:36, 27 September 2007 (UTC) “

  261. Angela Kennedy said,

    @ sigh, there are some occasions where the tu quoque is a reasonable counterpoint, but on this occasion your use of it is a fallacy.

    I, unlike the likes of Mike Ward and Chris Preston, have been able to explain, point by point, where my claims are substantiated, right here – and on the Bad Science forum. To keep trying to deny this is an untenable strategy that makes you and others look stupid.

  262. Mike Ward said,

    Angela

    I don’t know how Guy Chapman (in particular) was using the word “harassment”. If you have a problem you should ask him. If you believed his use was libel/defamation you could have taken appropriate legal action against him and left him to support his use of the word and show it was fair.

    If he was basing his use of the word “harassment” on information received from a third party like Wessely that would only be a defence if that information was factually irrefutable. If it was not then both he and the provider of the information would be potentially legally liable. I note you decided not to pursue action for libel or defamation within the required time scale.

    If I assume your quotation of Chapman is correct and in context (which I will tentatively do although I am not sure if “these individuals” is even referring to you) it doesn’t even mean that Wessely used the word harassment. It means that emails were exchanged and the content of them led Chapman to form the opinion that “these individuals” (which may or may not include you) were harassing Wessely.

    With regard to the information you were repeatedly demanding from Wessely’s boss I’m not quite sure what you wanted them to do. Did you want them to inspect every email Wessely had ever sent from his work and personal email account’s? Would they have done a search on Angela Kennedy or on “these individual’s”? Wouldn’t your actions be best described as a “fishing expedition”?

  263. Mike Ward said,

    BTW Angela

    Thanks for pointing out that it was you who made your letters public – it actually says that in the blog so I don’t know what your point is but never mind

    Also I can’t ever remember campaigning against people who don’t support a psychogenic cause for CFS/ME. I am a pinickity so and so who doesn’t link misquotes, strawmen and people who think use of death threats is acceptable. Please feel free to provide a link to when I have ever given a pro/anti psychogenic explanation. My actual point of view is “I don’t know”

  264. Teacake said,

    In lieu of my next post, which I’ll make later on if I can be arsed, I’d like to quote this sentence from Barney (Comment #250), to Angela, which I think bears repeating:

    “Continue peddling your intellectually bankrupt myths and I’ll just hope that you don’t cause too much damage to CFS sufferers whilst you’re riding your ego. “

  265. Mike Ward said,

    Just a quick apology for a couple of errant apostrophes and “link misquotes” when it should be “like misquotes”.

  266. Angela Kennedy said,

    @ Mike Ward. You are babbling now. You have tried your best to gerrymander your agenda to smear ME/CFS advocates as ‘harassers’ in support of Wessely’s highly suspect use of the term, but it hasn’t worked. Stuart Jones and Brian Deer are both examples of why Wessely’s words in his own massive and sustained press campaign, supported by the Science Media Centre, are so unsafe. By his and your logic, Jones and Deer are both harassers.

    I have watched you and others on the BS forum ME/CFS threads for years. You ALWAYS manage to attack ME/CFS advocates who dare object to psychogenic explanations for their illnesses, and your pernickety attention to detail is spectacularly absent when it comes to misquotes and strawmen and bad faith in those who SUPPORT psychogenic explanations for ME/CFS, or who go after doctors from a position of contempt. You, and others on there, exhibit a rank hypocrisy which belies your self-proclaimed attention to detail and analysis. You never exhibit any of that ‘pernicketiness’, just a pompous belief in your own rectitude and a partisan willingness to excuse straw men, misquotes, ad hominem and other fallacies of reasoning and exhibitions of bad faith whenever it suits you.

  267. Angela Kennedy said,

    @ Mike Ward. So either Guy Chapman or Simon Wessely is telling an untruth, is basically what you are saying. It is quite clear from my letter that it is any emails between Wessely and Chapman in which Wessely claims I am harassing him that I am requesting. I can see why I as an innocent being libelled is so hard for you to accept : your partisan agenda of smearing ME/CFS advocates, that you’ve engaged in for years, unfortunately (the interminable threads of hatred the community has had to witness on the BS forums) won’t allow you to acknowledge that. I have also explained here why I was not in a position to bring defamation actions (I was too poor) against those taking part in that libel. I see you’ve decided to just ignore that. It’s is shocking how the inconvenient facts I’ve highlighted are just ignored in favour of a relentless hatchet job on me, from you and certain others here.

    Chapmans’ post on the Wikipedia admin noticeboard was highly defamatory of me and inaccurate. Silly games of semantics aside, yes he was referring to me as one of those people who (he untruthfully alleges) ‘harassed Wessely in real life’. It’s quite clear when the full paragraph is read – although I expect you to do anything you can to invent someone else who is being discussed who is not me, even though I am being referred to in the allegation. Your desperation to deny that libel constitutes sophistry. This latest accusation of a ‘fishing expedition’ is yet another bad faith attempt to just deny the evidence.

    My correspondence with Jimbo Wales about Chapman’s libel is available here:

    http://tech.groups.yahoo.com/group/APK-PAPERS/message/19

    You have given me no indication whatsoever of any neutrality or good faith in the way you have treated me or the ME community, the vast majority who express themselves being online NOT being like sweet, docile Opti-mystic (unless he/she is stamping their little foot at me) who enjoys their CBT/GET. All you have exhibited is perverse ‘scepticism’ of any evidence that causes you cognitive dissonance, and a partisan acceptance of any evidence that supports your worldview, no matter how obviously flawed. I cannot take you seriously. No reasonable reader should.

  268. Angela Kennedy said,

    Yeah, thanks Teacake. All that ‘I want to find common ground’ codswallop from you – but as soon as I say to you ask me without prejudice what my concerns are, you show your true colours! That’s quite hilarious.

  269. MistyBlue said,

    What do you call it when somebody who constantly accuses others of posting ad hominems does so herself?

  270. MistyBlue said,

    Maybe it’s called, showing your true colours!

  271. Angela Kennedy said,

    It’s clear that the prospect of my getting to explain my reasonable position is something that clearly disturbs key people here. Attempting to engage in a smear campaign against me to somehow paint me as a ‘harasser’ of Simon Wessely (even though the facts clearly show I have been a victim of libel and have NEVER harassed Simon Wessely) is the chief intention of key posters here, both in order to shore up the myth of the ME ‘extremist’ and to prevent people from reading my book. I have tried to reason with these people and give the relevant evidence. But idealogues like these are incapable of reasonable discussion. I’m banging my head against a brick wall. Someone characterised the attitude we’ve been seeing here against ME/CFS advocates (or rather the whole issue of ME/CFS) as ‘reactionary’ – a bang-on assessment. There is something odd in those claiming authority to be arbiters of correct science, and reason, to be so full of unreason and prejudice against disabled people and those that support them (including doctors and scientists that support them).

    What I will do – in case there are reasonable people out there trying to make sense of what is happening on this blog and on the Bad Science ME/CFS threads, and who are trying to ascertain all ‘sides’ of this situation, is give the URL for my book on Amazon, which contains the back cover summary, references, and – usefully I hope – the first three pages of the introduction to the book in Amazon’s ‘look inside’ facility, which summarises the book’s key premise:

  272. Mike Ward said,

    Astonishing

  273. ChrisP said,

    Looks like spam.

  274. Foxtrot/Barb C.:>) said,

    So it all comes down to selling her book?

  275. Angela Kennedy said,

    I did only leave the link. I don’t know why the massive book cover image has come up and I certainly didn’t mean that to happen – though it is funny in the circumstances I have to admit. It’s certainly given me a giggle! However, as you people are bereft of any sense of humour unless it’s about slapping people you don’t like, I don’t expect any of you to appreciate the humour in what happened with the link.

    The book comes down to explaining the concerns of people about unsafe psychogenic explanations, so you have the situation the wrong way round Barb C. I wrote the book in order to make a coherent discussion about people’s concerns and objections to psychogenic explanations for their physical illnesses, including but not limited to ME/CFS, because being able to access means of doing that elsewhere is constantly blocked. I know that makes me evil in the eyes of the Bad Sciencers here, but that is because ANY attempt at a coherent discussion of such sends you all into a blind panic which plunges you all into a default hate mode. It’s weird to see that level of emotive hostility in people claiming to be artibers of correct science and rationality I have to admit.

  276. Angela Kennedy said,

    To summarise what you people are desperately trying to sidestep:

    As well as ‘death threats’, Simon Wessely has claimed as ‘harassment’ the following:

    1. Complaints to the GMC.
    2. Complaints to ethics committees.
    3. Complaints to employers.

    Here, I have shown how:

    1, By Wessely’s logic, Stuart Jones and Brian Deer can both be said, therefore, to be ‘harassing’ Sarah Myhill and Andrew Wakefield.

    2. Complaints to ethics committees by ME sufferers include the known example of the SMILE trial of the Lightening Process, which intends to inflict dangerous woo (by the standards of the Bad Science Forum’s collective at least) on children, even before such dangerous woo is inflicted on adults in clinical trials. This trial is being piloted by a colleague of Wessely’s, Esther Crawley. By Wessely’s logic, concerns about dangerous woo expressed through an official channel constitutes ‘harassment’.

    3. I am an example of someone who had to write to Wessely’s employer to establish if Wessely was innocent of the libel against me which was made in order to damage my reputation. Sadly his employers would not confirm that. Being victim of bad behaviour by an employee is a reason to write to employers. I know key people here have twisted themselves into contortions trying to portray me as a harasser just for maintaining my innocence of false allegations of harassment and seeking (though unsucessfully) to ensure a Professor of Psychiatry was NOT implicated in those false allegations. But those contortions are not successful.

    In addition, I have been able to show how the one example of ‘death threat’ that was put out in the media was nothing of the sort – unless David Cameron was guilty of a death threat towards last years rioters, by that logic.

    I’ve shown how even a newspaper printing objections to Wessely’s beliefs and this ‘award’ (which is akin to being given a medal by your mum, and in any case John Maddox’s comments about AIDS and homosexuals being so cringeworthy I wouldn’t want to be associated with his name and I’m guessing that holds true for many) is described as ‘harassment’ by Wessely’s colleagues.

    It is clear, therefore, that Wessely and his colleague’s constant claims of harassment are unsafe at best. NONE of them appear to be reliable narrators here. So to keep defending them and propagating those unsafe claims necessitates a special kind of gerrymandering, to maintain the agenda of ideological commttment to irrational and reactionary responses to ME sufferers and their supporters, who you consider recalcitrant for daring to object to psychogenic explanations for their illnesses, and their consequent dangers (including dangerous treatments). In the light of the evidence, that commitment takes on a faith-based quality, the irony of which has not escaped me, and I’ll wager others too.

  277. Mike Ward said,

    Angela

    Post 266 Not much to see here apart from the normal tirade with no evidence

    Post 267 Firstly an apology – I did indeed miss your comment on your lack of funds in post 183. I think it is important to admit mistakes don’t you?

    I am obviously not accusing either Wessely or Chapman of telling untruths. My views (based only on the paragraph you originally quoted) are given in post 262. Let me make clear that in my opinion you didn’t have a leg to stand on with regard to libel anyway – if only because of the ambiguity of the word “harass”. That includes the situation if “these individuals” did apply to you which was not clear in the quotation you gave in post 260.

    Still more wibbling but still no links or other evidence of my smear campaign etc etc

    Post 271 I would advise JDC to leave your spam with regard to your vanity publishing there. People can make their own decision whether to buy the book based on you comments here. I would also like to point out that your “Number One Fan” on Amazon reviews appears to be the same person who makes quite clear he approves of death threats in post 67 so people can draw their own conclusions.

  278. sigh said,

    @Angela,
    You’re ranting. Do you have any idea how your posts are reading now?

    And spamming a blog with your book isn’t funny – it’s just spam.

  279. Foxtrot/Barb C.:>) said,

    “Justin said: @ChrisP, I meant that when you intentionally cause serious harm to millions of disabled for decades, you should expect and you deserve bad things to happen to you, such as receiving death threats. I don’t know if he actually has gotten any, he has a history of distorting and lying about the facts, so it would not be out of character for him to be lying here. But I would not be surprised if he got some, again, considering all his abuse of the disabled.

    I discourage threats of physical harm to Wessely etc, but I do think he deserved them if they occurred.

    With all the concern for the feelings of these insurance lobbyists, trained as psychiatrists and posing as scientists, what about the welfare of the millions of ME patients he has harmed.

    Can we please get some sympathy, attention, actual science and help?”

    Do you honestly think that after writing this drivel, you will actually will get some sympathy, attention and actual science help? With “friends” like you in our community, we certainly don’t need enemies!!

  280. Foxtrot/Barb C.:>) said,

    @Angela
    Are you going to keep posting until someone actually does insult you so you’ll be able post prolifically on other venues, pointing a finger and saying, “See, see, I told you they were meanies.” :>)

  281. Mike Ward said,

    Foxtrot

    I would normally reply to Angela more robustly with regards to her abuse but it is obvious her tactic is exactly as you describe.

    Contrast with the brief chat I had with RJC early in the thread. Obviously we couldn’t find too much to agree about but at no time did he/she resort to Angela’s tactics.

    I plainly do not characterise anyone who doesn’t agree with me as an abuser despite Angela’s best attempts to paint this picture

  282. Teacake said,

    Hi Angela

    Still flogging this dead horse? Can’t fault you for trying. Unfortunately, given that you never seem to be on even nodding acquaintance with the truth on matters I do know about, I can’t take on trust a single word you say about anything I don’t, unless it’s independently verified elsewhere. It’s got to the stage where if you said the sky was blue I’d want to get a second opinion before believing you.

    Your posts are now coming across less as those of a thoughtful academic and more (see your comments in post #252) those of a petulant child, sulking that the cool kids won’t let her into the club. In fact, that’s the single word that sums you up – petulant. That, in case you’re wondering, is an ad hom.

    You keep banging on about how the Bad Science forum is supposedly attacking CFS/ME sufferers, and “the interminable threads of hatred the community has had to witness on the BS forums” – this is absolute nonsense. Even if it were true that the forums were full of hatred, the fact is that Bad Science is not search engine indexed – you’ll only see those threads if you consciously choose to go and look for them. Once again, Angela, you’re talking bollocks. By claiming a “smear campaign” you over-reach yourself so cartoonishly, so grotequely, that you reveal how unpinned from reality you are.

    What I say on Bad Science has no influence on CFS/ME sufferers – I’m just some random internet idiot saying whatever random idiot things a random idiot says in my particular tiny corner of the internet. Nobody is likely to listen to me. However, you have appointed yourself, unasked, as an advocate for CFS/ME sufferers. You’ve written a book. You contact researchers, or their employers. You hunt down people talking about CFS/ME and unload on them all your years of accumulated wisdom on the subject. What you say matters.

    So when you say stuff which is absolute arrant nonsense, you harm people. You harm them, Angela. You harm them in two ways.

    Firstly, by promoting a toxic view of a whole swathe of people researching into CFS/ME, you set back that research, you make it harder for that research to be properly assessed and understood, you make people not want to carry out further research, in short you undermine efforts to understand this affliction, and you undermine efforts properly to understand the research which is being done. Any genuine concerns there may be about the quality of research, and there surely are, is lost in the noise of your tendentious, puffed-up foghorning. There is a difference between genuine, honest criticism, and the hate campaign which is going on against people like Wessely, and you do not appear to understand it.

    Secondly, by promoting this myth that by looking into possibile psychogenic causes or promoting coping strategies for long-term sufferers, one is somehow abusing patients, dismissing their illness or telling them it’s all in the mind, you deprive sufferers of those coping strategies, the control over their condition and their destiny, and condemn them to a situation where they not only believe nothing can help, they also believe nothing can ever help. This is so incredibly unfair on sufferers, that words fail me in describing my contempt for you.

    In short, Angela, you are not highlighting a problem. You are the problem.

    I have previously stopped short of dwelling on the fact that you have a financial interest in perpetuating the shit-stirring, but since it’s you doing the stirring and you’ve stopped off to plug your book yet again, it’s getting harder to escape that conclusion.

    So here’s the thing. You’ve written this book, and it probably took you some time. At the start, you probably believed what you were writing, and thought you were helping. Now, it’s starting to look a little shaky but you’ve gone so far down this road you can’t see a way back. If you were an academic doing research and writing academic papers you wouldn’t be in this position, but now you’ve got a book to sell, bills to pay, and a bunch of people who you’ve given false ideation to that you’ve got an answer. You could have said “Sorry, I really made a mess of that book”, but that’s never going to happen now, really, is it? So this leviathan has taken on a life of its own, you’ve got to keep feeding it in case it turns on you, so you keep piling on your purulent, pustulent, pestilential bile, and hope that nobody notices how utterly bereft of any actual truth any of your arguments are. If anybody questions you, just shout louder, or say they’re ad-hom-ing you. Or part of a conspiracy of hate, that’s a good one. Bad Science forum can just be your unwitting patsies in this, because if you run in there, scream a load of conspiracy bollocks and run away, you’re bound to get a reaction you can spin as hatred against CFS/ME sufferers.

    Well, you either believe the crap you’ve written in the comments on this blog, and on Bad Science, in the total absence of any evidence to support your view, in which case you’re three vouchers short of a pop-up toaster, or you don’t believe it, in which case you’re a mendacious scumbag.

    So I implore you, Angela. Haven’t the CFS/ME sufferers suffered enough? Can’t you please stop your bullshit and let people get on with trying to find causes, coping strategies and treatments for this horrible affliction? What on earth did they do to deserve you?

    I should stress that, in all this, I bear you no malice. Unlike some people on the “advocate” side of things, I don’t think threats or violence are justified, no matter how much you disagree. If we’d met in real life, we might have got on, and I might even have let you buy me dinner. But in your actions around this particular corner of the internet, and the interactions you have with real people in the CFS/ME arena, both researchers and sufferers, leave me with the view of you which is less than flattering.

    Was that an ad hom?

  283. Teacake said,

    Just to add, last para should read “…no matter how much one disagrees with somebody else’s view.” I don’t want anybody to think I’m accusing them of approving of violence…

  284. sigh said,

    Round of applause for Teacake – that is quite the best summing up of this particular ‘advocacy’ effort I’ve seen.

  285. Teacake said,

    D’you think we’ve given her enough ammunition yet?

  286. Wake up said,

    Is this still continuing?

    May I ask why anyone here supports researchers who use anecdotal reports for patient selection and assessment? Why do you consider that to not be bad science?

  287. Teacake said,

    May I ask why you think anyone here does?

  288. Wake up said,

    The comments indicate that many do.

  289. Teacake said,

    In what way? I can’t see that view expressed. Can you give an example?

  290. sigh said,

    @ Teacake

    “D’you think we’ve given her enough ammunition yet?”

    All quiet in her echo chamber of choice but give it time………

  291. Wake up said,

    @Teacake

    Why not say what you personally believe. Do you support the use of anecdotal reports as the only tool for research?

  292. Teacake said,

    @Wake up – now that’s a different question, isn’t it? Do I support the use of anecdotal reports as the *only* tool for research? No, of course not.

    I’m no medical or research expert, as I’m sure you’re about to point out, but there are presumably circumstances where anecdotal evidence is useful. For example, as far as I am aware there is no blood test or measurement I can objectively take to assess a patient’s quality of life, or their level of pain. In those circumstances, I’d have to rely on the patient’s own report of their condition which, surely, is anecdotal.

    Or have I missed some point or definition you’re driving at? I presume, by the way that, since you’ve changed tack, you can’t actually point to anything here that supports your previous claim.

  293. Wake up said,

    @Teacake

    It is a different question, but why would you support the use of anecdotal reports as a research tool in medicine at all?

    It is impossible to compare pain from person to person using anecdotal reports. Equally quality of life is a subjective experience. It is a pretence to suggest these can be measured and be beneficial.

  294. Teacake said,

    Um, why do you have to compare from patient to patient? Surely it’s more relevant to plot each patient’s changes over time? For example, using different interventions?

    Anyway, rather than trying to get me to stand up your argument, whatever it is, why you try to stand it up? Why don’t you say why you think many posters in these comments support the use of anecdotal reports as the only tool for research, showing any comments which support this argument and, if you’ve time, you could also state why you think this has any relevance to either the original article or the comments below it.

  295. Wake up said,

    @Teacake

    Plotting change over time using anecdotal reports is also impossible. Use of anecdotal reports is the method of choice by Wessely and Sharpe. Why then do you support their work?

  296. Teacake said,

    @Wake up: Really? That’s your argument? I’m ready to be corrected by somebody who knows what they’re talking about, but I don’t accept your contention that the use of anecdotal patient report is impossible. Difficult, yes, beset with confounding factors, certainly, but not impossible.

    On top of that, this says nothing about my attitude to the work of Wessely or Sharpe. I have in fact no opinion on their work.

    Given your apparent predisposition to draw false inference from what you read, I’ll also not trust your assertion that patient anecdote is the research method of choice of these two people either.

  297. Wake up said,

    @Teacake

    It is impossible because there are always confounding variables introduced when using anecdotal reports and because of the vast number of biases such an approach introduces. It is apparent that you don’t have enough knowledge to understand the difference between the method used by Wessely, Sharpe and their co-authors, and the standard approach for a scientist.

  298. Teacake said,

    Well, since I haven’t made any representations about the work of Wessely and Sharpe et al, or their methods, I’m not quite sure what your point is, Wake up, nor why you repeated my comment about confounding variables back to me. Why don’t you try making your point, and saying what it has to do with this article or its comments, and why you think that many people that have commented here support some idea that anecdotal evidence is the only way to do research, as you’ve claimed?

  299. Wake up said,

    @Teacake

    Have you ever read the anecdotal Oxford or Fukuda criteria for CFS? Wessely and Sharp use those. These are not appropriate methods to use for medical research.

  300. Teacake said,

    That’s an assertion I don’t feel qualified to comment on, but I suspect neither are you. It feels like you’re making a judgment on the suitability of an approach on ideological grounds rather than a knowledge of the subject.

    But this still remains irrelevant because (tap-tap-tap is this thing switched on?) you still haven’t articulated why any claimed shortcomings in Wessely’s or anybody else’s methodologies are relevant to this blog post, or its comments, or why you think that many of the people commenting here support the idea that anecdotal evidence is the *only* way to do research. Is this because you can’t support that assertion, and should I draw from this any conclusions about your ability to support your assertions about research methodologies, which you seem to have switched to in lieu of answering?

  301. jdc325 said,

    Hello again Wake up.

    Do you now accept that you were wrong to claim that (a) Doctor Myhill had complied and (b) there was no case to answer?

    http://jdc325.wordpress.com/2012/11/17/mecfs-harassment-of-researchers/#comment-15860

  302. Wake up said,

    @Teacake

    The crucial issue that you have missed is that anecdotal reports are essentially a personal judgement. Wessely and Sharpe’s ideology is therefore nothing more then their a feeling. On what basis can you support that?

  303. Wake up said,

    “My friend has drawn your attention to the fact that Dr Myhill has over the last ten years had a number of complaints which have been made against her, including complaints about the nature of her website, which have been fully and carefully investigated by other Panels and by other Committees, who have in the end, in every case, decided that no action should be taken.”

    “That website was subject to GMC scrutiny between 2005 and 2007 and was not found wanting at that time. Indeed I have been under almost constant GMC investigation during my time in private practice and have faced six fitness to practice hearings, all of which were cancelled with no case to answer.”

    “There is a standing invitation on the website for professionals and patients to send me ideas and indeed this has greatly improved the website content. I am always happy to change the content of the website given good reason.”

    “Q Then the final one I noted that Mr Summers suggested was the websites that have been gone through at this hearing should be removed, and you have already indicated, I think in relation to the breast cancer case, that you would be prepared to withdraw all of that website? A Yes, of course,”

    “Q Mr Macdonald referred to the change in culture that websites are now freely available. Is there not a potential for vulnerable patients, looking at something like the breast cancer website which we have on page 214, taking that as gospel, if I can call it that, and— A Well, I hope that the nature of the website and the friendly way in which information is given, and the easy access that people have, because they can email me directly from the website, will make it very unlikely that that would happen, and if the Panel has any concerns over that, then I am very happy to rephrase that in a way that you feel might be less threatening.”

    “2. Within 14 days of today’s hearing you must ensure that in relation to your website, or any website relating to your medical practice or business, all pages, downloadable content, including documents, forum or discussion board content, or other references or online media relating to the following subjects must be removed:

    a. The medical management of cases relating to cardiology, or cardiovascular disease including; chest pain due to ischaemic heart disease; acute coronary syndrome; heart failure; or pulmonary embolus; b. The treatment of asthma; c. The treatment, testing, identification, diagnosis or management of breast cancer; d. The use of hormonal contraceptive medication; e. The pharmacological management of primary or secondary prevention of vascular disease; f. Any immunisation or vaccination;”

    http://www.supportdrmyhill.co.uk/iop_hearing_transcript.html

  304. jdc325 said,

    Wake up,

    Would you care to explain how that supports your two claims? As far as I can see, it doesn’t. You might like those quotes but they don’t demonstrate compliance and do not support your claim that there was no case to answer.

    Perhaps you would like to check the link I gave you earlier in the thread and see for yourself that Dr Myhill did not in fact comply with the requirement to remove content relating to immunisation or vaccination?

    Once you’ve investigated that, you can look up the warning Myhill was given and see for yourself that there was in fact a case to answer and Dr Myhill was duly warned by the GMC.

  305. ChrisP said,

    Wake up, re:

    “May I ask why anyone here supports researchers who use anecdotal reports for patient selection and assessment? Why do you consider that to not be bad science?”

    Could you point to soem examples of this happening on this thread so I can attempt to respond to your question?

    Thanks

  306. Teacake said,

    Wake up said: “The crucial issue that you have missed is that anecdotal reports are essentially a personal judgement. Wessely and Sharpe’s ideology is therefore nothing more then their a feeling. On what basis can you support that?”

    Uh, of course anecdotal reports are essentially a personal judgement, so what? But why are you asking me on what basis I support Wessely and Sharpe? I have repeatedly told you that I don’t, and I’m not attempting to, though it’s becoming more and more clear that you’ve no basis on which to argue against them. I ask you once more to explain why it’s relevant to this blog post, or its comments, or why you think that many of the people commenting here support the idea that anecdotal evidence is the *only* way to do research.

    This is all really worthwhile and everything, you asking me to defend a position I don’t hold and making disconnected stream of consciousness statements that have no relation to each other or reality, while ignoring any questions asked of you, but I’d hate for this flurry of posts to cause Angela to miss all those ad homs I flung earlier. Angela, they’re back at Post #282.

  307. Wake up said,

    @ChrisP

    You support the use of anecdotal reports don’t you?

    @Teacake

    You say you don’t support Wessely and Shape but do support their practices? In what way do you say there is no basis to argue against anecdotal reports? They have no validity to challenge.

  308. ChrisP said,

    Wake up, what makes you think I do?

  309. Wake up said,

    @ChrisP

    Your comments and how you won’t state your position here now.

  310. ChrisP said,

    Wake up, which comments. Please be specific about the comments that provide that impression.

    This is the third post I have asked you for examples of your claim.

  311. Teacake said,

    @Wake up: What is the relevance of your line of questioning to the original blog post or to the comments below it? Also, please explain the statement you made that several people here think that anecdotal evidence is the only way to do research. Ever going to answer this?

  312. Wake up said,

    @ChrisP

    Are you now trying to backtrack on what you believe now that you realise it has no validity?

  313. Wake up said,

    @Teacake

    Anecdotal reports are not a suitable tool for research. I have stated where I stand, but you refuse to now back your position. So I take it that you now agree that the work of Wessely, Sharp, and others is nothing to do with science?

  314. Teacake said,

    @Wake up: I don’t think you actually understand my position, and I agree with nothing in your post. Get back to the point.

  315. ChrisP said,

    Wake up, I am still waiting for you to provide examples of my post that provide you with impression that I hold certain beliefs.

    Is your failure to do so an indication that you have simply made up beliefs for me to hold on the basis of no evidence?

    It certainly seems so.

  316. Wake up said,

    @Teacake @ChrisP

    Now you fail completely to state what you positions are. This occurs when people backtrack. I take it you will continue to refuse to admit what you believe? That is the strangest way you could be when you are arguing with others about what they have to say. Despite the evidence for your support of these methods I will ask again, do you or do you not believe that anecdotal reports are a suitable research tool?

  317. ChrisP said,

    Wake up, still waiting for you to point out the evidence in support of your claims about me.

  318. Wake up said,

    @ChrisP

    Are you denying that you support the use of anecdotal reports? Easy question. What exactly is your field of research?

  319. Teacake said,

    @Chris: Is it just me or is there a pattern here – when they can’t beat or perhaps even understand your argument, they just make shit up and attribute it to you instead. Is this what they do with Wessely?

  320. Teacake said,

    @Wake up: No, you first. Explain your claim that many of the people commenting here support the idea that anecdotal evidence is the *only* way to do research.

  321. Wake up said,

    @Teacake

    You do support anecdotal reports as a tool.

  322. Teacake said,

    @ Wake up: I do support the anecdotal report that you’re a tool. Was that the answer you were looking for?

  323. Wake up said,

    @Teacake
    You appear to be having trouble accepting your flawed belief in the power of anecdotal reports.

  324. ChrisP said,

    Teacake, it certainly seems to be Wake up’s position.

    Wake up also seems to think if you make a statement often enough it magically becomes true.

    Wake up, I am still waiting for you to point to the evidence that supports your statements about me. Your failure to provide any evidence indicates you are in the ‘making shit up’ camp.

  325. Wake up said,

    @ChrisP
    You also appear to be having trouble accepting your flawed belief in the power of anecdotal reports.

  326. Wake up said,

    @ChrisP

    Is your difficulty due to your field being plants and not medicine?

  327. Teacake said,

    Wake up, there’s not much point discussing anything with you until you stop making shit up and explain yourself. Any chance you might tell the truth at any point between now and, say, post #500?

  328. ChrisP said,

    Wake up, I am astonished by your claims that I have a ‘belief in the power of anecdotal reports’ and wondering why you are ascribing such beliefs to me. That is why I have been asking for evidence. The fact that you have consistently failed to provide any evidence leads me to conclude you have simply made that up.

    Are you in the habit of making things up?

  329. Wake up said,

    @Teacake @ChrisP

    Then use the opportunity to state what you believe about anecdotal reports? Are you worried how it will look supporting the work of Wessely, Sharp and those who also use them?

  330. sigh said,

    @ChrisP/Teacake
    You do know that you’ve encountered Wake up previously, yes? A certain smoked fish and PCR.

  331. Wake up said,

    @ChrisP

    You know exactly what your beliefs are regarding anecdotal reports. Why now say this “leads me to conclude you have simply made that up”. Is it correct or not? You have to know as it is your belief?

  332. Teacake said,

    No, really? Is it really? I was considering a joke about PCR, and now I know it’s not necessary, if we have the real genuine article here.

    The style certainly fits, but have you any other evidence, sigh?

  333. ChrisP said,

    Wake up, so you have made shit up about other people. Why then should anything else you right be given any credence?

    It is over to you to demonstrate there is a point in engaging with anything you write.

    Over to you.

  334. Wake up said,

    @ChrisP

    Why do you claim I have made up anything? You are refusing to now stand by your beliefs.

  335. ChrisP said,

    Wake up makes up more shit.

  336. Wake up said,

    @ChrisP

    As you support both Wessely and Sharpe you must support anecdotal reports. You haven’t attempted to claim anything else. This is why so few take your group of science correctors seriously.

  337. ChrisP said,

    Wake up, you are just making up more shit.

  338. Teacake said,

    Wake up, are you kipper7?

  339. Andysnat said,

    I think JDC needs to monetize this blog with some ads.

  340. Foxtrot/Barb C.:>) said,

    @ChrisP 336

    Is that a rhetorical question?

  341. Teacake said,

    Is this a good opportunity to resurrect that “Kennedy assassination as imagined by Kipper” skit wot I wrote?

  342. Andysnat said,

    Which Kennedy?

  343. Mike Ward said,

    I don’t know why anyone is trying to reason with Wake Up

    In post 135 Benji states that Stuart Jones post was ironic. Wake Up somehow twisted this into something about wether Benji or the GMC thought Jonas’ posts were innocuous in post 136.

    If you read posts 138 to 141 Wake Up then accuses other posters of misquoting him and trying to change the subject on two distinct occasions despite the posts being their in black and white!

  344. Teacake said,

    Andysnat said: “Which Kennedy?”

    Oh, good point. President John F. Kennedy, assassinated on 22nd November 1963, should have made that clear.

  345. Mike Ward said,

    I think you’re all missing the most important point

    Angela has a book out

  346. Teacake said,

    What, where? She should have said! She must know all about CFS/ME, having researched it and everythi- oh, wait, I’ve already done that one.

  347. jdc325 said,

    @Wake up,

    I see 13 comments from you since I posted this last night at 10:16pm. You don’t seem to have responded to my post.

    Have you now done your research and found that you were wrong on both the question of compliance and the issue of whether there was a case to answer?

  348. Andysnat said,

    Was Simon Wessely on the Grassy Knoll?

  349. Foxtrot/Barb C.:>) said,

    Opps, wrong post, wrong person on post # 340. Should have been:

    @Teacake # 338

    Is that a rhetorical question?
    Sigh.

  350. Guy Chapman (@SceptiGuy) said,

    I do not recall saying that Angela Kennedy was the person convicted of harassment, if I did I am happy to set the record straight. The conviction for harassment was not Angela, it was another person involved with One Click, and it was against a different researcher (not Wessely). Angela Kennedy was, when I was involved, a prime mover behind One Click, and they (and she) exhibited a very obvious double standard; it is clear that, for them, anything other than implacable opposition to Wessely makes you the Enemy and thus fair game.

    I can’t remember all the details any more, but I wrote http://chapmancentral.co.uk/wiki/Wesselygate pretty much contemporaneously. The important thing to note is the difference between their version and mine. All I did was tone it down to something that /might/ pass muster as a Wikipedia article, rather than a green-ink rant.

    For this I was characterised as a hagiographer and viciously attacked.

    Needless to say the text is grossly inaccurate even when toned down, but that only became clear later.

    My recollection is that One Click’s diatribes were identified as coming from Angela Kennedy, but I cannot remember any more and have no intention of wading through their cesspit of a website to find out.

    I understand that Angela Kennedy is no longer involved with One Click, so this has to be viewed in its context as a historical dispute.

    I have been told that Angela Kennedy has been responsible for sending abusive and threatening communications, and for abuse and intimidation in person of those against who she harbours a grudge, but this is hearsay, albeit from sources I have no reason to disbelieve.

    My view today is that Angela Kennedy is displaying all the signs of wrongteous anger.

  351. Guy Chapman (@SceptiGuy) said,

    And looking back, it seems that the point at issue is a comment I made to this effect: “”These individuals have also harassed Wessely in real life. That we can’t include because it’s not directly stated in the sources, but I
    have now exchanged emails with Wessely and it is the case.”

    As I say, I do not recall specifically accusing Angela Kennedy. I would remind Ms. Kennedy of the terms of Section 7 of the Protection from Harassment Act which defines a course of conduct (constituting harassment) as being conduct causing alarm or distress, including speech, on two or more occasions. For example, picketing public lectures.

    It is provably the case that one of the One Click founders (i.e. “these people”) was convicted of harassing another researcher in the CFS field.

    It is also very obvious to everyone but Ms. Kennedy that there is an important difference between informal debate on the talk pages of Wikipedia, and content that goes into the articles. The content One Click put in the Wessely article was spectacularly inappropriate, e.g: “Professor Wessely should be granted a dictionary of his own, so far has he stretched the meaning of the English language while attempting to explain that ME although a ‘real’ illness, is often first imagined. He has trodden the tightrope of confusing semantics with the balance of Blondel and the focus of a train spotter.” Does anyone here think that Wikiepedia should allow content like that to remain on the site?

    As I said above, they apply a double standard. They consider it perfectly reasonable to try to use Wikipedia to attack their bête noir, but react with anger and outrage if they are criticised for doing so. And they also seem to bear a grudge. Thsi was, what, five years ago? And it’s still being discussed as if it was yesterday, because of course to them the fact that the Wessely biography is not a hatchet job appears to be a permanent source of anger.

    Margaret Williams has the measure of One Click: http://www.meactionuk.org.uk/Information_about_One_Click.htm (and google one click margaret williams for their attacks on her). Again, I understand that Ms. Kennedy is no longer involved with One Click, but my memory s that she was at the time. One Click was, and is, in my view, a vicious bunch of hypocrites. And I am not alone in that view.

  352. Teacake said,

    @Guy Chapman: Thanks very much for taking the time to come and make those posts, and putting your view. I found your comments illuminating, to say the least.

    This is going to seem like labouring a point, but given the propensity for certain individuals to grab the wrong end of the stick and then run with it, I’d appreciate a clarification. It’s in respect of this Wikipedia episode which resulted in Ms. Kennedy contacting Prof. Wessely’s employers to ask for copies of his communications with Wikipedia.

    Can you confirm whether Ms Kennedy was named in the article of concern and, if she wasn’t, was One Click?

  353. Guy Chapman (@SceptiGuy) said,

    As far as I know, neither Angela Kennedy nor One Click was ever mentioned in the Wikipedia article, but One Click was unquestionably discussed on the talk page; we were in little doubt that it was One Clickers who inserted the diatribe against Wessely, the source text was at that time published on their site (still is I suspect). Suzy Chapman (ME Agenda blog) was also involved. Both she and AK were banned.

    The only loss to Wikipedia is the fact that we still, even now, don’t have a good description of the controversy because those who are motivated to write about it seem to be fairly consistently unable to do so in anything close to rational language. They consider him to be worse than Satan (literally: http://www.theoneclickgroup.co.uk/news.php?id=1110#newspost).

    Usual disclaimer applies: I could be misremembering, it was all a long time ago. All I know is that I was viciously attacked for simply enforcing Wikipedia policy, and am still being attacked for it. We have a page on exactly this: http://en.wikipedia.org/wiki/WP:STICK

    They don’t seem prepared to stick to the science, they insist on always attacking the people involved, apparently in the belief that disagreeing with them is always a sign of a deep-rooted hatred of CFS patients or something. Some of them describe themselves as scientists, but if they were then they would know that the way to win a scientific argument is with better science, not personal attacks.

  354. Guy Chapman (@SceptiGuy) said,

    I have been wading through this discussion. A note to Angela Kennedy: you do not become an “academic critic” by self-publishing an “academic book” through a courseware publisher. To be taken seriously as an academic critic requires that you have proper scientific credentials, or at least publish in peer-reviewed journals. Did nobody think to point this out to you at any stage? Your “scientist” friends have not done you any favours. What you have is just another self-published polemic, as far as the world of science is concerned.

  355. Teacake said,

    @Guy. Thanks for the reply. What you describe matches exactly the pattern of behaviour we’ve been seeing here and on the Bad Science forum over the past couple of weeks. I’d never heard of any of the parties you mention before, and I’d only heard of Simon Wessely when a bunch of people with a particular agenda descended on a discussion of XMRV research on Bad Science last year. There does seem to be this MO of twisting whatever anybody says, either misconstruing questions or criticism as attack, or projecting evil motives onto anybody who doesn’t immediately agree with them. Explaining that you barely know who Prof. Wessely is cuts no ice if you’ve been marked as being one of his supporters.

    It does not seem to occur to them that it might be possible to disagree with them, or to want further explanation, without actually being a fully paid-up supporter of whoever it is they’re opposing. But no matter how many times this is explained, we’re just told we’re part of some conspiracy of hate. They don’t stick to the science because they can’t: it seems their position is one of ideology first and foremost, and science is of little or no relevance.

    All I can say is that I’m grateful I turned away from a career in medical research 15 years ago, as there’s no way I’d be prepared to put up with this sort of behaviour, and I applaud the patience of anyone who can.

  356. Mike Ward said,

    I echo Teacake’s points but (and I realise I’m repeating myself) it is a tiny minority of people who involve themselves with this type of behaviour. I have had perfectly reasonable discussions with people who are in opposition to Wessely but the harassers and the apologists for the harassers drown out the reasonable majority with vocal invective and bullshit.

    With regard to Angela’s accusations which have been smeared all over the Internet….well ……what can you say? I am aware that there will always be grey areas whenever highly charged subjects are discussed but I really think that the only person who is conflating legitimate behaviour with harassment is her.

    I think that the approval of death threats in post 67 shows an abhorrent attitude which the vast majority of CFS patients and their advocates realise is not only vile but counterproductive.

    Angela has a book out by the way

  357. Guy Chapman (@SceptiGuy) said,

    @Teacake, yes absolutely. They seem completely unable to grasp the possibility that reasonable people might legitimately differ, even in detail. They only allow for one answer, theirs, when actually science hasn’t even finally settled on the question yet, let alone found a consensus that there is a single answer to it.

  358. Guy Chapman (@SceptiGuy) said,

    @Mike: I have also had reasonable discussions with them. I have also tried to work with them to document the controversy on Wikipedia, but without much success. When you peel back the layers it looks very much as if a lot of the controversy is actually caused by the cranks.

  359. Mike Ward said,

    @guy

    I will say that, while looking into this over the last few days, I was amazed how much of the furror could be tracked back to the activities of a few irresponsible shit stirrers.

    All very upsetting really

  360. In Vitro Infidelium said,

    Re: Suzy Chapman. Given that a) SC has not been party to this Blog, b) SC seems only to have contributed rarely and entirely civilly on BS (from whence this current discussion was spawned c) neither the ME Agenda blog nor the extensive work of classification at http://dxrevisionwatch.com/ , carry any support for harrassment e) a lot of people have been banned at one time or another from Wikipedia (many by Guy) and f) – SC is not trying to flog some crappy book full of her own prejudces then perhaps mention of SC in this discussion is ‘less than appropriate’.

    Re: ‘They’ – using they – even with the proviso that ‘they’ are only a small minority, is not helpful in isolating the kranks and users from the main body of M.E/CFS affected people who discuss the illness they or their family members suffer from in entirely reasonable ways. Yes there’s more than one and always giving a full list of names is a chore. But creating a ‘them’ infers an ‘us’ – and that ‘us’ may be excluding of of the very people who the champions of good science would want on side. –

    I was telling the world about the demonisation of Simon Wessely two years ago: http://cfsmirror.blogspot.co.uk/2011/01/saints-and-demons-in-cult-of.html but I can still easily be cast[e] as part of the ‘they’ where my support of the ‘claimed’ science might border on the equivocal. Sectarianism is unhealthy, no matter which side of the divide it comes from.

    IVI

  361. Guy Chapman (@SceptiGuy) said,

    It seems likely that most of it is down to a very few individuals, yes.

    This discussion has prompted me to look into AK’s claims to be an academic. Apparently she’s an associate lecturer with the OU (on the DD100 module) – which is definitely not a role that would qualify under the public understanding of academic. It is not a research role. I can’t find any details of her academic qualifications, it’s safe to say that a PhD is unlikely to be among them, or we’d be told about it. Is this really something on which to build the persona of “AcademicAnge”? Or is there professional jealousy at work, given Wessely’s undoubted stature within the psychiatric profession, and his place as a tenured professor at King’s?

    “the hydrostatic paradox of controversy. Don’t you know what
    that means? Well, I will tell you. You know that, if you had a
    bent tube, one arm of which was of the size of a pipe-stem,
    and the other big enough to hold the ocean, water would stand
    at the same height in one as in the other. Controversy equalizes
    fools and wise men in the same way. And the fools know it.”
    — Oliver Wendell Holmes

    Might be apposite.

  362. Teacake said,

    I’ve held off commenting on the academic standing of the individuals concerned, firstly because it feels like a cheap shot, and secondly because it plays into the narrative that there’s some academic elite which won’t let the little people into their club, and which automatically dismiss their legitimate concerns out of hand.

    Much better, I think, to tackle the errors and disinformation directly. And I agree with IVI in post #360 about the dangers of a ‘them’ and ‘us’ way of describing things – it’s something I’ve been prone to writing here, and it doesn’t help, particularly. I must do better.

  363. Guy Chapman (@SceptiGuy) said,

    @In Vitro Infidelium: I mentioned SC only as one of the two identified individuals who were banned from Wikipedia (http://en.wikipedia.org/wiki/User:MEagenda). My knowledge of the dispute does not go much beyond Wikipedia. My view at the time was that SC was polite and rational and likely to be able to bring understanding to the matter, but offsite communications with Jimbo appear to have revealed another side. That could be a misunderstanding, though; from what I know of it, AK’s agitation was probably enough to prompt Jimbo to want to simply wash his hands of the whole lot of them (http://en.wikipedia.org/w/index.php?title=Wikipedia:Administrators%27_noticeboard&oldid=166193778#Can_we_de-escalate_this.3F). I suspect we could have worked with SC if AK had not been part of the mix. AK seems to me to do a great job of winding everybody up, especially herself.

  364. Guy Chapman (@SceptiGuy) said,

    @Teacake: AK engages in an appeal to authority (“I am an academic” / “researcher”). It is not only fallacious, it turns out to be a false authority.

    I suspect some insecurity, and I think that informs the assessment of her behaviour. That’s all, really. Anyway, I am not going to talk about that woman any more, she’s caused me quite enough annoyance for one lifetime.

  365. Guy Chapman (@SceptiGuy) said,

    Oh, other than to say: I still have my emails form the time, including courtesy copies sent to me of communications between the Wikimedia Foundation legal counsel and others internally. I reiterate my original point re double standards – probably down to the bunker mentality that inevitably ensues when you decide that a large part of the world is engaged in a sinister conspiracy against you.

  366. Teacake said,

    @Guy Chapman #364: Your points are well made. Countering a false appeal to authority is a valid approach, and I apologise if I implied criticism of your doing so.

  367. Teacake said,

    And just to add: Stupidly, I’ve just gone and looked at the Talk page on Wikipedia for the Simon Wessely article. Wow.. just wow.

  368. jdc325 said,

    @Teacake,

    Did you go through the archives? I’m still reading through them…

  369. Teacake said,

    @jdc325: Just the talk page. My wiki-fu is not very strong, is there something of interest in the archive or is it the same old same old?

  370. jdc325 said,

    Just the usual, Teacake. Sadly.

  371. Andysnat said,

    Hehe – The Talk page archive is full of Angela complaining about Ad Hom attacks and telling everybody about harassment. I can’t find a mention of her book, or her academic leanings.

    As an interesting debate, do we think that Ang’s book could be cited on a wiki page, or would it violate the N:POV rule, whatever that is.

  372. Teacake said,

    Andysnat said: “As an interesting debate, do we think that Ang’s book could be cited on a wiki page, or would it violate the N:POV rule, whatever that is.”

    Er, for a given value of interesting. Would there be a notability rule for books?

  373. Mike Ward said,

    Well despite the marketing efforts over the last few days I’m pretty sure that the four copies in stock on Amazon UK which were there the other day are still there

  374. Foxtrot/Barb C.:>) said,

    @ Guy Chapman I only had a passing knowledge about the Wikipedia episode. Every time I think I can’t be shocked by this group, it happens again.

    @Mike Ward #356 Thank you a million times over. As a patient it is frustrating that these people think they represent all of us. They are impeding any progress to help our condition. I know many patients as well as others are hesitant to speak out against this group and I understand that. But if they don’t say something about how appropriate this group is acting, they are just as complicate as the ones who are doing the damage.

    And thanks to all the posters here who are speaking up!!

  375. Mike Ward said,

    @foxtrot #374

    If you read this by Angela and a supporter it becomes clear that she believes that if you are not with her you are against her – she doesn’t want to shy away from conflict with people who may be blocking her strategies.

    This certainly doesn’t mean that she supports illegal threats but there seems little doubt that her aim is conflict and confrontation rather than consensus and conciliation.

    The supporter leaps straight into a convenient Godwin

    http://twentysixsoldiersoflead.wordpress.com/2010/01/31/the-courage-for-conflict-kennedy-m-e-and-political-conflict-bayliss/

  376. Teacake said,

    @Foxtrot: I agree with most of what you say, but I think you might be being a little hard on patients that don’t speak up. The extremists don’t represent them, and haven’t been asked to do anything on their behalf, so I don’t think the patients should bear any responsibility to condemn extremists any more than they bear responsibility for their actions. And who can be blamed for not wanting to put their head above the parapet and face this shit-storm?

  377. Foxtrot/Barb C.:>) said,

    Good point, Teacake. I tend to be hard on myself as well.:>)

  378. In Vitro Infidelium said,

    @Guy. Thanks for your additional comment re:SC. Guilt by association is so easy to infer, even when not intended and as a kind of ‘mud’ it tends not just to stick but on the internet become a ‘definitive’ truth.

    @Teacake – while patients may not have a moral imperitive to stand up to the extremists and ‘users’ who seek to appropriate the entire discourse about M.E/CFS, we do have a very practical imperitive – quite simply “if not us, then who ?” Left solely to others who have no direct investment in the issues surrounding M.E/CFS, then the voice of the ‘reasonable patient’ is made absent. Researchers, clinicians and all those who support Evidence and Science Based Medicine are key parties to the discourse – but patients and carers add breadth which is otherwise missing. The likes of AK claim this role for themselves; only by the ‘reasonable patient’ speaking up can an authentic patient voice contribute to a productive exchange about the nature of a challenging health issue.

    IVI

  379. Teacake said,

    @IVI: Oh I wouldn’t deny that it’s desirable, on a number of levels, for patients to play a key role in the discourse, in fact it’s imperative that the discussion isn’t left solely to clinicians, researchers and self-appointed advocates. Don’t think you’ll get much disagreement from anybody there. But that’s a different issue from saying, as I was, that no individual patient should feel morally obliged to condemn the extremists. It’s neither necessary for every patient to enter the discussion (merely those that want or feel the need to), nor does entering the discussion necessarily equate to challenging the extremists.

  380. Guy Chapman (@SceptiGuy) said,

    @Mike Ward: Guess who the Wikimedia Foundation General Counsel was at the time AK was kicking off? Now there’s irony for you!

  381. Mike Ward said,

    @guy

    Ha! I had to goggle that.

  382. Andysnat said,

    OMG, I thought that was just a funny coincidence, until I read a bit further. Haha.

  383. sigh said,

    Posted on the echo-est of echo chambers – the one that academic-angie frequents because nowhere else will have her:

    “Perhaps slightly off topic, but look at this!

    http://www.rcpsych.ac.uk/pdf/CALCLiaisonFaculty%202013prog28Nov2012.pdf?forumid=331851

    Mr and Mrs Wessely are spreading their misinformation about our disease in Exeter next spring, just 15 mins from my house.

    Where is the next syndrome coming from? The Answer is Blowing in the
    Wind
    Professor Simon Wessely

    I wonder if one of us could gain admittance to report on this?”

    Y’see, this is the kind of fuckwittery that Professor Wessely is putting up with day in day out. As an isolated incident, it’s of no real note. But when you put it in the context of the years of email abuse, death threats, complaints to the GMC, FOI requests etc etc it’s harassing behaviour. One FOI request ins’t harassment. Two or three FOI requests aren’t harassment. But string them together with all the other crap and it surely is harassment.

    The conference in question is a private event on private premises for members of a professional body. WTF gives anybody the idea that it’s OK to crash it? Why does it need reporting on? For the record Professor Gerada’s session is titled “Liaison Psychiatry- A perspective from primary care”. Professor Wessely’s is in the post above. Any mention of CFS/ME? Any mention of “spreading their misinformation about our disease”? Any mention of CFS/ME at all in the conference schedule? FFS – this makes me so angry. Professor Wessely needs a heads up on this.

  384. Jack said,

    I was actually more interested in the Keynote Speeches:

    http://www.rcpsych.ac.uk/pdf/CALCLiaisonFaculty%202013prog28Nov2012.pdf?forumid=331851

    Autoimmune Limbic Encephalopathies- the science Dr. Angela Vincent

    Autoimmune Limbic Encephalopathies- clinical presentation Dr. Belinda Lennox

    Now they might have more relevance to my diagnosis of ME. Who can say what Wessely is talking about? Could be bird flu :)

  385. sigh said,

    Anything interesting that any of the other speakers might have to say is likely to be drowned out by the cacophany of abuse that habitually follows the Professor around.

  386. Amy said,

    @ sigh

    Where is this echo-est of echo chambers?

  387. sigh said,

    It’s where Wake up and Angie keep each other company:

    hxxp://peoplewithme.com

    (hxxp’d for safety)

  388. Amy said,

    Thanks. Just curious to see from whence you quoted.

  389. sigh said,

    Don’t spend too much time reading there, it’ll make your eyes bleed.

  390. Simon wessely said,

    Greetings. In case anyone is clamouring to attend the annual conference of the faculty of liaison psychiatry, which sadly is normally a rather small., sedate but friendly affair, just to listen to me talking about chronic fatigue syndrome, I am afriad they will be disappointed. I thought that the bob Dylan allusion would have been sufficient to spot the topic, but it seems not. It’s about wind farms.

    Oh, one more thing for the conspiracy theories. Have a look at the educational history of the general counsel for Wikipedia during the time when a small geoup of people wrote stuff and nonsense about me and then compare it with my cv, paying special attention to dates. Co incidence? Surely not?

    Compliments of the season to all, and thanks also to those who seem to be able to tell the difference between what I have done, write and think compared to the untruths and distortions put out by a tiny number of people.

    Simon Wessely

  391. Teacake said,

    There’s something quite appealing about the idea of Simon Wessely reading through the entire trailerful of cockbadgers that is the 389 preceding comments, and murmuring to himself “The one who smelt it, dealt it. That’s so true, that is.” before posting comment #390.

  392. Mike Ward said,

    Well I refuse to believe that Simon Wessely doesn’t eat babies until he provides a stool sample for analysis

  393. jdc325 said,

    http://www.cabinetoffice.gov.uk/news/new-year-honours-list-2013

    The other awards in health include a knighthood for Professor Simon Wessely who has pioneered academic work to improve mental health services, both preventative and for treatment, for the British Armed Forces.

    I’d link to the responses from critics of Wessely, but the threads I’ve seen have contained defamatory comments and I tend to try to avoid repeating libels.

  394. jill cooper said,

    Do let me help:

    http://www.meactionuk.org.uk/Arise-Sir-Simon.htm

    That’s fairly straightforward

  395. georgeanne7680 said,

    @Jill What a load of crap and no it’s not straight forward. Once again another diatribe filled with memes which contain half truths and exaggerations to the point where frankly it’s getting tiresome. I don’t care if they make him king. But as a patient I am getting sick of this kind of thinking as it isn’t productive and frankly makes us look like the stereotype we are trying to avoid. People are putting him in a no win situation. In the meantime this obsessive preoccupation is wasting valuable time which could be used for, oh I don’t know, maybe PRODUCTIVE ADVOCACY?

    My comments above have nothing to do with my feelings about psychology, the diagnosis of psychosomatic illnesses, whether pro or con but has to do with advocacy. Criticism can be a valuable tool if done in an appropriate manner but the type of criticism in the above blog only begets hate and is not productive.

  396. georgeanne7680 said,

    ^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^
    Barb C.:>) /Foxy

  397. mrsP said,

    For a more balanced review of Gulf War syndrome than the one from Margaret Williams that Jill Cooper links to, the following is recommended:-

    http://www.sciencebasedmedicine.org/index.php/gulf-war-illness/

    The Gulf War report is properly analysed and not cherry picked.

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