ME/CFS: Harassment of Researchers

November 17, 2012 at 6:14 pm (Miscellaneous) (CFS/ME, Chronic Fatigue Syndrome, Esther Crawley, Max Pemberton, ME/CFS, Michael Sharpe, Myalgic Encephalopathy, Myra McClure, Simon Wessely)

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?