Carol Binks has written an excellent comment which she has shared on FB, but it hasn't shown up in the comments' section.
My comment is under the name of P Tilley, the account holder.
This is my comment.
Michael Sharpe has “stopped his work on chronic fatigue syndrome because of online abuse.” Really?
His PACE Trial recommends CBT/GET (Cognitive Behavioural Therapy/Graded Exercise Therapy) as an effective treatment, but the US CDC has, since, removed CBT/GET from its recommendations for treatment, stating that Graded Exercise may cause harm. The US AHRQ has recommended that the Oxford Criteria, used to recruit people to the PACE Trial, be retired. Scientists from the Workwell Foundation have published a letter for ME/CFS Healthcare Providers on their website (workwellfoundation.org) saying that GET “not only fails to improve function, but is detrimental to the health of patients and should not be recommended.”
The Board of the US Open Medicine Foundation End ME/CFS Project, led by Prof. Ron Davis, includes 2 Nobel Laureates and 6 National Academy of Sciences members. Prof. Davis is a signatory to the letter to the Lancet, calling for an independent review of PACE, which he has called “a classic bad study.”
QMUL spent over £200,000 in a failed attempt to prevent the PACE Trial data from being released. As is their wont, the researchers tried to use the possibility of threats from “young men, borderline sociopathic or psychopathic” as an excuse not to release the data. The Commissioner of the FOI Tribunal concluded that these claims were “grossly exaggerated” as the only evidence that the researchers could come up with was that one of them had once been heckled at a Seminar.
Amongst all of this are the patients, many of whom have reported serious harm from CBT/GET, which is designed to counter the patients’ “unhelpful fear avoidance beliefs, leading to avoidance of activity”, a theory rejected by biomedical researchers around the world, with the Chief of the US CDC’s Chronic Viral Diseases Branch, which houses the ME/CFS Program, saying: “ME/CFS is a biological illness, not a psychological disorder .... These patients have a variety of abnormalities that affect multiple symptoms such as: Immune and neuroendocrine; Cellular metabolism; and Autonomic system regulating blood pressure and heart rate.” (Chronic Fatigue Syndrome: It’s Real and We Can Do Better).
In January, more than 40 MPs passed a motion, in a Parliamentary Debate in the House of Commons, to support increased funding into biomedical research for ME. The stories from their Constituents were heart-rending, not least those of children being removed from their families for months and made to engage in exercise therapy. (See Hansard - Appropriate ME Treatment - 24 January 2019).
I think Professor James C. Coyne summed up the situation quite well in his tweet, yesterday, which said “Of course, the researcher quit because of trolls and not because he cannot get refunded. Not because doubts have been raised about the validity of his work. And not because reanalyses of his work come to different conclusions.”
From the BPS point of view, I think the new parts of this article are all aimed at neutralizing Tuller, by trying to make three points. It will be successful if these three points become part of the common narrative and a failure if they do not:
1. Tuller is a paid lobbyist (about $80,000 per year), and therefore is not a reliable source of fair information. He's being paid by one side. Yes, he is completely biased, but more than that, he is paid to do what he does.
2. Tuller is not a scientist. He presents himself as a doctor of public health to mislead people, but his PhD is basically in reporting, and he has no scientific research credentials (as the academic world measures them).
3. Tuller uses extremist language, which shows he's not a scientist, no a fair source of information, and just an emotional lobbyist.
The stuff about harassment is all old, but I think the shots at Tuller are new. I mean, we know that he's paid with money raised right here, and his background is as a reporter, and his strong language, but I don't think the general population knows it, and I suspect the goal is to have the Coachane editors and similar groups of people treat him as a paid lobbyist and not as a scientist (such as they would normally do for a PhD of Public Health).
Ron Liddle waxes not-so -elequently in The Sunday Times today about those pesky ME patients and the saintly Prof Sharpe who has been driven from the field of research by abuse:
From Morgellons, then, to myalgic encephalomyelitis (ME) — or chronic fatigue syndrome, yuppie flu, whatever you want to call it — and its equally lethargic wardmate, fibromyalgia. Both are distressing conditions, if of mysterious origin; illnesses we did not know about 40 years ago. Both result in intense, consuming weariness and sometimes nausea. With fibromyalgia, your body aches, too.
Chronic fatigue syndrome is said to afflict one in 270 people in this country and it is a long-term illness. As with fibromyalgia, there is no clear diagnosis nor any cure. Hundreds of thousands of lives are wrecked by these ailments and millions of working days lost to the economy. We ought to do something about it, don’t you think?
Dr Michael Sharpe is just the latest expert within the medical profession to quit doing something about it, which he did last week. Sharpe, a professor of psychological medicine from Oxford University, had devised a programme of cognitive behaviour therapy that obtained good results in alleviating the symptoms of this disease. But he has given up because of the vituperation he received from the PWME (yes, that stands for People with ME) community; the hatred, the insults, the violent and frankly unbalanced nature of the texts and emails. He was a fraud and a charlatan, some alleged, and was conspiring in a cover-up. So, he’s not doing it any more.
A few years back another researcher, Professor Myra McClure, concluded ME was primarily a psychiatric condition. She was driven out by the hate mail, too, and no longer researches the disease. Then there is Professor Simon Wessely, from the Institute of Psychiatry, Psychology and Neuroscience at King’s College London, who reached a similar view — and one shared by most doctors. He received vigorous death threats from PWME, who were presumably feeling a little more sprightly than usual.
The ME lobby insist their illness is “real”, that is, occasioned by a virus, rather than being a psychiatric condition. Wessely finds it astonishing that they would rather be the victims of a thoroughly nasty virus than a mental condition that might be gently assuaged by therapy. The US spent a lot of money investigating a link between ME and two unpleasant retroviruses, XMRV (xenotropic murine leukaemia virus) and pMLV (polytropic MLV); the conclusion was that there was no link and, further, that the notion that ME is caused by any virus should be written off “once and for all”.
Such is the success of the provisional wing of the ME lobby that the evidence is ignored by the World Health Organisation and our own National Institute for Health and Care Excellence. Let them have their medical illness if they want it, seems to be the response.
Increasingly, we live in a post-truth world where those who clamour
loudest are indulged — even if this mitigates against finding some sort of relief for what is unquestionably a serious and miserable disorder, and even if their complaints about a virus have no basis in fact. It is similar, in a way, to the demands of the transgender lobby, determined to have its own way despite clear scientific evidence that suggests a man who identifies as a woman is still essentially a man.
And this stuff is swallowed whole, because it is far easier to do that than it is to cleave to the truth.