Reuters 13th March 2019: Article with Sharp, Wessely, Per Fink and co attack Dr Tuller and ME patients

Countrygirl

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Here is the long-awaited Reuters attack on Dr David Tuller and ME patients orchestrated by Prof Sharpe, Wessely, PerFink and others following the parliamentary debates.

It is a looong diatribe of misinformation, painting us as aggressive activists and abusers.

Apparently, our abusive behaviour is chasing these esteemed researchers from the field when they are only trying to help us and we will suffer for it. (!)

The piece concludes with Colin Barton claiming how CBT and GET enabled him to function again and how patients are intimidated into keeping silent about their improvements from psychological treatment. (Isn't Esther Crawley a patron of his Sussex group?)

So as not to give the site traffic, (hopefully) the link below is to the archived article.


http://archive.fo/lwDNQ

Scientists researching treatments for chronic fatigue syndrome say they face online abuse and harassment. Some are leaving the field. It’s a ‘new normal,’ they say, and patients may lose out.
By KATE KELLAND

Filed March 13, 2019, 11 a.m. GMT
LONDON – The emails, tweets and blog posts in the “abuse” folder that Michael Sharpe keeps on his computer continue to pile up. 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, the Oxford University professor is subjected to almost daily, often anonymous, intimidation.
A Twitter user who identifies himself as a patient called Paul Watton (@thegodofpleasur) wrote: “I really am looking forward to his professional demise and his much-deserved public humiliation.” Another, Anton Mayer (@MECFSNews), likened Sharpe’s behaviour to “that of an abuser.”
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, 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.
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.
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, who describes himself as an investigator, not a campaigner, told Reuters he wants to help CFS/ME patients.
Reuters spoke to three specialists in CFS/ME in Britain, Denmark and the Netherlands who have reported receiving online abuse but continue to work in the field. The specialist in the Netherlands, a psychologist who works at a chronic fatigue treatment centre, said that a few years ago, research teams there had five treatment studies looking at cognitive behavioural therapies for CFS/ME patients. Now, they have no treatment studies at all. Junior researchers are wary of entering the field because of the abuse they’ve seen others suffer, said the specialist in Britain, a doctor who spoke on condition of anonymity.
Per Fink, a professor at the Research Clinic for Functional Disorders at Denmark’s Aarhus University Hospital, said he kept going because he didn’t want to let down patients, some severely ill, who are “open to any treatment that may help them.”
Simon Wessely, a professor of psychological medicine at King’s College London and former president of Britain’s Royal College of Psychiatrists, said he decided to stop conducting research into treatment approaches for CFS/ME several years ago because he felt the online abuse was detracting from his work with patients.
But he is still the subject of what he calls “relentless internet stalking.” 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 scrutinised,” he said.
Wessely’s experiences are echoed by Aarhus University Hospital’s Per Fink, who runs a clinic that offers patients exercise and talking therapies.

Fink said he and the organisers 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.
Describing himself as a doctor and researcher “who just does my job in an attempt to help people,” Fink told Reuters his trip to New York was worse than anything he’s experienced before. “They are scaring people away,” he said. “Doctors don’t want to speak about it – they try to keep a low profile. And many researchers and clinicians say they won’t go into this area of therapy because it’s so difficult.”
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.”
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.”
In April last year, Tuller secured $87, 500 in online crowdfunding to “debunk” the PACE trial findings. He refers to the study as “a piece of crap” and “garbage” and says he is determined to see it discredited. At speaking events filmed and shown on YouTube, he has ripped up copies of the study to show his feelings about it. Tuller has also posted a 15,000 word review of it via the website of a Berkeley colleague.
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.
In Britain, government guidelines on treating CFS/ME published by the National Institute for Health and Care Excellence (NICE), currently recommend cognitive behavioural therapy and graded exercise. But these too are under review, due to be revised and republished by 2020. 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.

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 analysed evidence from eight studies on exercise therapy for CFS/ME patients.
In Britain there are at least 50 specialist chronic fatigue syndrome services that treat around 8,000 adults each year under government guidelines, offering behavioural 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. In the survey, more than 1,000 patients were asked about fatigue, physical function, general function, mood, pain and sleep problems before and after getting the services.

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.
 
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Kate Kelland not only wrote the mis-informed article about Cochrane 'withdrawing' the graded exercise systematic, she wrote the "Pushing limits can help chronic fatigue patients" article on the PACE trial back in 2011.

As far as the unbalanced mischaracterisation of patients views in this article go, it is likely that she's doing this on behalf of Sharpe/White/Wessely, as part of her association with the UK Science Media Centre.
 

Gijs

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''Some are leaving the field...'' I hope all mentioned abusers like Sharpe, Wessely and White also Crawley are leaving this field, we will not miss them! Maybe when they leave real objective science can take over. At the end patiënts are much better off... without their pseudoscience..
 

Pyrrhus

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Well comments deactivated, is this on tweeter so we can comment and defend ourselves somewhere.
MEaction has discussed the issue at length and decided that the best course of action is... nothing.

Tweets and Facebook messages will only give the article more momentum, leading more news outlets to pick up the story and re-publish it.

And clicking on these articles can have the same effect: the more clicks, the more the article will spread.
 

Tom Kindlon

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JaimeS

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hixxy

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Isn't amazing how articles like this attacking the ME patient community always get published on widely viewed news websites but anything defending us doesn't get anywhere near this kind of circulation.
 

Roy S

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Sharpe and Wessely quickly retweeted this.
I am for the good tweets in response.

Click on the posting time to read responses.
 

Roy S

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taniaaust1

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It's so twisted when the ones who put out info which makes so many of us worst then cry foul when this patient group tries to protect ourselves, only by expressing our negativity towards the things which are having negative impact on us.

They should be happy that patients do not go about physically assaulting them after all we've been put through due to these "ideas" of theirs. Ideas which have caused us to have to deal with hate from others on top of the severe illness disabilities we already had. And there there once again pushing how bad we as a patient group is.

Imagine the outrage in the cancer community if they were being sent to doctors who were not believing them that their illness was real and telling them would recover by just increasing their activity when they were too sick to be doing more and their community was watching more and more get bedbound by bad advice and neglect. Would they then advocate for bad things to be stopped.. hell yeah.
 

Countrygirl

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More nonsense today, this time from the Daily Mail:


https://www.dailymail.co.uk/health/...e-researcher-QUITS-online-trolls-hostile.html

Top Oxford researcher trying to bust the mystery of chronic fatigue syndrome says he QUIT and turned his focus to new research because trolls are 'too hostile'
  • Little research on chronic fatigue syndrome exists
  • Dr Michael Sharpe of Oxford University conducted one of the largest studies on the condition to-date
  • His study suggested exercise and talk therapy may help reduce debilitating fatigue and increase physical activities in patients
  • But a diagnostic criteria of chronic fatigue is that physical activity makes debilitating pain and fatigue worse
  • And patients are often dismissed by doctors as having a mental health issue
  • Dr Sharpe and his colleagues faced such aggressive trolling he has quit studying chronic fatigue altogether
By NATALIE RAHHAL DEPUTY HEALTH EDITOR FOR DAILYMAIL.COM
PUBLISHED: 22:29, 14 March 2019 | UPDATED: 01:41, 15 March 2019

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Dr Michael Sharpe (pictured) says he has quit studying chronic fatigue syndrome after being the subject of online trolls
Scientists' work may be published in journals mostly read by their peers - but that doesn't protect them from the attacks of trolls on social media and beyond.
Dr Michael Sharpe, an Oxford University professor of psychological medicine, has told Reuters that he was so thoroughly inundated with hateful comments, emails and tweets that he has decided to quit his research focus area altogether.
Dr Sharpe is one of the few scientists who has focused his research on chronic fatigue syndrome - also known as ME/CFS - and published research that suggested the poorly-understood condition might improve with talk therapy and exercise.
But many some who suffer from the disease, as well as some who study it, have objected to his research, particularly the PACE trial, one of the largest projects on ME/CFS to date, which suggested that exercise and talk therapy may help treat it.