Watton and Mayer have never been treated by Sharpe for their chronic fatigue syndrome
A great many pwME who suffer as a consequence of MS' work, will not have been treated by him.
They object to his work, they said, because they think it suggests their illness is psychological. Sharpe, a professor of psychological medicine, says that isn’t the case. He believes that chronic fatigue syndrome is a biological condition that can be perpetuated by social and psychological factors.
MS is pedantically correct, albeit:
- Obfuscating he believes the biological condition to be deconditioning.
- Perpetuation of a condition due to "social and psychological factors" is still saying it is a psychological problem.
Sharpe is one of around a dozen researchers in this field worldwide who are on the receiving end of a campaign to discredit their work. For many scientists, it’s a new normal: From climate change to vaccines, activism and science are fighting it out online. Social media platforms are supercharging the battle.
Reuters contacted a dozen professors, doctors and researchers with experience of analysing or testing potential treatments for chronic fatigue syndrome. All said they had been the target of online harassment because activists objected to their findings.
Very selective in their contacts it would seem. Another variation on omitting findings you do not want to find.
Yet some patients and their advocates say this amounts to a suggestion that the syndrome might be a mental illness or psychosomatic, a notion that enrages them. They would prefer that research efforts focus on identifying a biological cause or diagnosis.
Now why might that be ... ? Oh yes, because it is a biological condition
perpetuated by biological mechanisms, not psychological.
Sharpe no longer conducts research into CFS/ME treatments, focusing instead on helping severely ill cancer patients. “It’s just too toxic,” he explained.
Any whose fault is that toxicity down to?
Recent tweets directed at Wessely include one accusing him of playing “pathetic ego driven games” with the lives of people with CFS/ME, another saying “Wessely is a dangerous and evil individual” and another saying “We die, b/c of u.”
Yet SW would never consider if the people who have died would necessarily have, if the BPS approach to ME had been to engage in good honest science.
The campaign to have evidence-backed treatments discredited was “doing a terrible disservice to sufferers from this condition,” said Wessely. “Patients are the losers here.”
But it's not just about evidence, it's about the
quality of the evidence. Crap-evidence-backed treatments should and must be discredited, else ... patients are the losers.
Tuller himself hasn’t conducted or published any peer-reviewed clinical trials on CFS/ME.
And neither were Woodward or Bernstein ever president of the USA.
His argument is that the therapies evaluated in the PACE trial are based on a misguided hypothesis that CFS/ME patients suffer from “unhelpful” beliefs that they have a biological disease, and that their symptoms of fatigue are made worse by deconditioning due to inactivity. He also says he thinks the trial’s methodology was flawed. The scientists involved reject those arguments.
Conveniently overlooking the great many scientists who agree with those arguments. (Boy, they are shooting themselves in their collective feet throughout this article. So much to work with here!).
As well as dissuading researchers from working in the CFS/ME field, scientists fear that pressure from campaigners has also begun to show in the wording of guidance for patients and doctors from national health authorities. In the United States, the CDC has removed references to cognitive behavioural therapy and graded exercise therapy from its website.
What a pile of BSP-journalistic BS. I wonder what the CDC might think about being accused of basing their decision on activist bias. This sort of sleight of language in this article is actually a godsend, because it highlights how totally lacking in science their arguments are ... just desperation-driven rhetoric.
A source close to NICE told Reuters the agency had been subjected to “a lot of lobbying” aimed at getting it to review the guidelines “and in particular to change recommendations around graded exercise therapy and cognitive behavioural therapy.” The source declined to go into detail about who was behind the lobbying.
Ah, so NICE is also being driven by lobbyists.
Cochrane’s editor in chief, David Tovey, confirmed that he had met with Tuller, but said the meeting had nothing to do with his decision to temporarily withdraw the review. He said complaints about the review from patients and campaigners had raised “important questions” about how the review was conducted and reported which he and his fellow editors felt needed to be addressed.
Ah, a breath of almost-fresh air.
Lillebeth Larun, a scientist at the Norwegian Institute of Public Health who led the Cochrane Review, is one of several scientists who vociferously disagreed with Tovey’s decision to withdraw it. For her, the move is a sign that the activists who have plagued her for years have now got to her editors. In the decade or so that she’s been conducting research in this area, she told Reuters, she’s endured online attacks and abusive emails, and at various points had to take a break from working due to the pressure. Returning to a CFS/ME project would make her feel physically sick with anxiety.
“Attempts to limit, undermine or manipulate evidence based results, pressure or intimidate researchers into or away from any given conclusions, will ultimately have a negative effect,” she told Reuters. “It will only lead to those researchers choosing to work in other areas and reduce the resources dedicated to providing the help patients so desperately need.”
If researchers withdraw from doing rubbish research and make way for good researchers, that's OK with me.
Colin Barton, chairman of the Sussex and Kent CFS/ME Society – a patient group in southern England – said talking therapies and graded exercise helped him recover to the point that he can lead an almost normal life. He told Reuters that in his experience, patients who talk about having been helped by psychological or graded exercise therapies come in for abuse just like the researchers. They face accusations that they were never ill in the first place; that their condition was misdiagnosed; and that their recovery is therefore fake, he said. As a result, he said, many recovering or recovered CFS/ME patients feel forced to withdraw from the debate.
Probably are misdiagnosed, but does not mean we would accuse them of not being ill in the first place. And not that their recovery is fake, but a recovery from something other than real ME.
