Musicians?
Yes but I don't think she was suggesting that we were anything less than a full orchestra. I think the allusion lies elsewhere.
Musicians?
"Band of Merry Men"Yes but I don't think she was suggesting that we were anything less than a full orchestra. I think the allusion lies elsewhere.
Eight years after he published results of a clinical trial that found some patients with chronic fatigue syndrome can get a little better with the right talking and exercise therapies
Watton and Mayer have never been treated by Sharpe for their chronic fatigue syndrome, a little-understood condition that can bring crushing tiredness and pain. Nor have they met him, they told Reuters. They object to his work, they said, because they think it suggests their illness is psychological.
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 analyzing or testing potential treatments for chronic fatigue syndrome. All said they had been the target of online harassment because activists objected to their findings.
Only two had definite plans to continue researching treatments. With as many as 17 million people worldwide suffering this disabling illness, scientific research into possible therapies should be growing, these experts said, not dwindling. What concerns them most, they said, is that patients could lose out if treatment research stalls.
No cause has been identified, no formal diagnosis established and no cure developed.
Many researchers cite evidence that talking therapies and behavioral approaches can help in some cases. 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.
Many researchers cite evidence that talking therapies and behavioral approaches can help in some cases. 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.
One of those leading the campaign against research into psychological therapies for CFS/ME is David Tuller, a former journalist with a doctor of public health degree from University of California, Berkeley.
Tuller refers to researchers who explore and test treatments for CFS/ME that feature a psychological element as “insane” and a “cabal” suffering from “mass delusion.” They are bent on pursuing “bogus and really terrible research,” he told Reuters.
Of more than 20 leading research groups who were publishing treatment studies in high-quality journals 10 years ago, Sharpe said, only one or two continue to do so.
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.”
Wessely’s employers at King’s College London have taken advice on the potential risk and have instituted X-ray scans of his mail, he says. “Everything I say and do in public, and sometimes even in private, is pored over and scrutinized,” he said.
Fink said he and the organizers of a conference he addressed at Columbia University in New York in October 2018 were hounded by complaints and protests from CFS/ME activists. A petition calling for Fink to be disinvited was signed by 10,000 people. Tuller – who in his blog wrote that the person who invited Per Fink to speak at the conference must be “uninformed or stupid or both” – called Fink a “scary guy” whose methods had “destroyed families.” Tuller urged readers of his blog to go to the Columbia conference and demonstrate.
Most researchers say they are happy to engage in discussion.
Tuller has also posted a 15,000 word review of it via the website of a Berkeley colleague.
Tuller has also posted a 15,000 word review of it.
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.”
At the heart of the attacks on Sharpe, Wessely and other chronic fatigue treatment researchers is a study known as the PACE trial, which sought to evaluate the effectiveness of different types of therapy in CFS/ME patients.
Richard Horton, the editor of The Lancet, said his journal had received emails and letters about PACE but has no plans to retract it. He said what is needed to allow for progress in any field of medical research is “an open and respectful approach by all parties to one another.”
Tuller himself hasn’t conducted or published any peer-reviewed clinical trials on CFS/ME. He has co-authored a critique of PACE.
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.
He said his work is helping patients by “clearing out the bad science to make way for some good science,” such as research into the condition’s biological basis.
Another campaign, which goes by the acronym MAIMES, or Medical Abuse in ME Sufferers, operates from Britain. It has a standard letter for people to send to their local member of parliament demanding a public inquiry into the PACE trial. There’s also a Facebook page called “Abuse of ME Patients by Health Care Professionals” which has some 680 followers. The page runs stories from unnamed patients who accuse Sharpe and others of harming sufferers by calling them “lazy” and forcing them to exercise when they can’t.
The campaigner and doctor behind MAIMES, Sarah Myhill, has posted YouTube videos setting out her views: “I liken it to child abuse,” she says in one that has been viewed more than 8,000 times. “This amounts to a form of abuse, because these people” – CFS/ME patients – “do not have the energy to defend themselves.” Myhill has published several books advocating what she calls a “naturopath’s” approach to treating symptoms of CFS/ME – one using a tailored combination of nutrition, rest and medicines. She hasn’t published peer-reviewed research on the efficacy of her approach.
Myhill told Reuters that she had complained to the General Medical Council – the body that maintains the official register of medical practitioners in the UK – about Sharpe and other scientists involved in the PACE trial, but her complaint was rejected. Myhill showed Reuters the letter she received from the General Medical Council. It said it was “not able to identify any issues which would require us to open an investigation” into the researchers. Contacted by Reuters, the Council did not elaborate.
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.
Publishers, too, are feeling the heat. In a move described as “disproportionate and poorly justified” by the researchers involved, editors of the Cochrane Reviews science journals said in October that they would be temporarily withdrawing a review that analyzed evidence from eight studies on exercise therapy for CFS/ME patients.
Tuller told Reuters in emails in October that he considered the Cochrane Review to be “fraught with bias” and said its authors have bought into “delusions that these studies (the ones they reviewed) represent good science.” After hearing news of the review’s temporary withdrawal, Tuller said he’d had a “long meeting” with Cochrane editors in Britain last summer, and had “pressed them hard.” “So did others,” he said.
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.
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.”
Speaking by phone, Watton said he has been ill with CFS/ME and unable to work in his former job as a builder for 15 years, and feels let down by the medical establishment. Reuters was unable to independently verify his account.
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.
"In Britain there are at least 50 specialist chronic fatigue syndrome services that treat around 8,000 adults each year under government guidelines, offering behavioral and psychological therapies. Research published in July 2017 showed around a third of adults affected by the illness who attended these specialist clinics reported substantial improvement in their health."
As far as I was aware no-one knew he'd recovered
It is a straight propaganda hit job. Fails every basic standard of journalism, and fair debate.That this piece is so weak on substance, and yet so confidently one-sided...
If what this patient says is correct and they were diagnosed with a new onset EBV, what is known as glandular fever in the UK or mononucleosis in the USA, this can be very severe in adults and cause a post viral fatigue sydrome lasting several months. When or if this transitions into ME/CFS is, to some extent, a matter of opinion, however the long term prognosis in this subgroup is relatively good.And to show his appreciation of high-quality science, our friend Mike has re-tweeted this today
View attachment 6549
Link to tweet for anybody not blocked by himCode:https://twitter.com/RecoveryNor/status/1109449543802863616
Of course Recovery Norge is the pseudo-patient group in Norway that exists to promote LP.
I have written to him about SMC and this whole mess, although it was before the Reuters situation.I do wish Monbiot would bite the bait on this.
I didn't but I don't think you need to see anything other than Paul's tweet to know that it was not abusive or threatening or anything of the kind.Have you seen the whole original tweets about which Reuters were complaining? this does not appear to be serious journalism.
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.
RESEARCHERS at Sussex University are leading the way in studying ME or Chronic fatigue syndrome and Fibromyalgia by investigating the post-exertional malaise that is a key marker of the illnesses and also looking at the mechanisms of chronic pain and fatigue.
https://www.gscene.com/news/me-taken-very-seriously/Colin Barton, chairman of the Sussex ME Society said: “We are very pleased to be assisting with these important studies that should increase biomedical understanding of these potentially life ruining illnesses.”