Shoddy article from the Guardian: How Prof Sharpe suffers as a result of ME Activism

Countrygirl

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https://www.theguardian.com/society...KtfXpCHX08uDGQK8jKN5y4JmtY7S8xANOOeZIHq9XPbIA


The Observer/The Guardian
ME / Chronic fatigue syndrome

ME and the perils of internet activism
Research into the chronic illness, which affects 250,000 people in the UK, may be stalling because of online criticism and abuse

Andrew Anthony
Sun 28 Jul 2019 11.00 BST




Illustration: James Melaugh/The Observer

It’s become a truism of modern-day politics that social media and the online activism it enables have coarsened debate and left politicians vulnerable to campaigns of intimidation. What is less widely known is that the same is said of medical science. Earlier this year Michael Sharpe, a professor of psychological medicine at the University of Oxford, announced that he had withdrawn from research on myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), because the field had become “too toxic”.

Sharpe says that he has received “thousands of emails calling me every obscenity you can imagine” – largely from ME sufferers or their advocates. But this, he reckons, is not the real problem. What concerns him far more is when activists target the official machinery to undermine a professional reputation.
“I don’t know how many freedom of information requests we’ve had,” he says. “It’s well over 100. There have been three debates in parliament about the Pace trial with one or two MPs using parliamentary privilege to allege that we’re fraudulent scientists. We’ve had investigation by the Health Research Authority. Most of us have been reported to the General Medical Council in an attempt to get our medical licences removed. So you find yourself constantly under investigation for some kind of fraud or semi-criminality or medical misconduct. And that is the problem. You can’t function like that.”

By 2011, and the publication of the Pace trial, Sharpe’s opponents were a lot more organised. “Social media had become more prominent,” he says. “A lot of this had been people in their bedrooms writing in green ink up until then.”

But what really made the difference, he says, is that “the Americans got involved”.
One of these is a man called David Tuller, a former HIV campaigner, who has become something of a hero to the ME/CFS community in the UK. He takes a highly detailed approach to medical papers, closely reading them to uncover any inconsistencies or potential flaws. He publishes his findings on a well-read blog called Virology.

It’s a development, says Sharpe, that has moved the conflict on to a “whole other level”. Such blogs and forums, he says, have become “a coordinating centre for actions against people getting the ‘wrong answers’”.
Tuller has called the Pace trial a “piece of crap” and says that his goal is to “completely discredit” it. He describes researchers who conduct psychological tests for treatment of ME/CFS as “insane”, and he was instrumental in persuading the respected science journal Cochrane Database of Systematic Reviews to withdraw a paper that looked at eight randomised controlled studies of exercise therapy for ME/CFS. Sharpe says that the Cochrane editor “wilted badly… under direct pressure” from activists. The editor has since retired, and Sharpe understands that his decision is to be reversed.

“We got a fairly clear answer, but it wasn’t an answer that people wanted to hear. One of the patient organisations had actually co-sponsored the trial, and when they saw the answer they then dropped it because it wasn’t the right answer. So part of the essence of this is that there is a right and a wrong answer, which is very different to the way we work. We just start with questions and test hypotheses. But these people are coming from a different perspective. And unfortunately we keep getting the wrong answers.”

Charles Shepherd is a GP and medical adviser to the ME Association. He, along with many ME campaigners, insists that the Pace statistics were massaged and that in fact the results show no significant difference between CBT and GET and the other options in the trial.

Below is Michiel Tack's response to Prof Sharpe's latest attempt to misrepresent reality and the Guardian's lazy journalism.


Yesterday at 4:10 PM ·

In a recent article in the Guardian, critics of the PACE-trial are the subject of mischaracterization and false accusations. https://web.archive.org/…/me-perils-internet-activism-micha…
I wrote a brief blog posts correcting some of the mistakes in the article, here: https://www.s4me.info/…/new-poor-guardian-article-m…/page-2…


ARTICLE: "The trial became the subject of controversy for several reasons. One is that it looked at ways of dealing with the symptoms of an illness rather than exploring a cure for a disease. Another is that it suggested there might be a psychological component to the manner in which sufferers experience the illness.”

COMMENT: "When researchers publish clinical trials on other behavioral interventions for ME/CFS such as the envelope theory or pacing, there is little controversy. When papers describe the negative effects stigma and misunderstanding have on ME/CFS patients there are no claims that studying this psychological component is inappropriate. When the vice-president of the IACFS/ME Lily Chu, wrote an article about depression and suicide in ME/CFS and the lack of access to appropriate mental health care, she was lauded for raising the issue. Some of the most vocal critics of the PACE trial such as James Coyne, Leonard Jason, Ellen Goudsmit and Carolyn Wilshire have been academic psychologists. It seems rather unlikely that they criticize the trial for "suggested there might be a psychological component to the manner in which sufferers experience the illness.”

ARTICLE: "finally, question marks were raised over the trial’s methodology."

COMMENT: The article doesn’t mention however that the authors deviated from their protocol in reporting the outcomes and results of the PACE trial. They failed to specify these changes in full and did not provide a sensitivity analysis to see how the changes affected the results. When this was pointed out, the PACE-authors refused to provide answers or information about the effect of these changes. PLOS One had to publish an expression of concern for one of the PACE-publications because the authors’ refused to share their data is as recommended by journal policy. Eventually part of PACE trial data became available, through a freedom of information request and first tier tribunal decision. A reanalysis according to the method specified in the published protocol, found that the PACE authors had inflated recovery and improvements rate threefold. There was no longer a significant difference between the intervention groups. An open letter signed by more than 100 prominent ME/CFS experts including researchers clinicians and MP's has called the Lancet to "commission an independent re-analysis of the individual-level trial data, with appropriate sensitivity analyses."

ARTICLE: "David Tuller, a former HIV campaigner, who has become something of a hero to the ME/CFS community in the UK."

COMMENT: David Tuller is an experienced journalist and Senior Fellow in Public Health in Journalism at the Center of Global Public Health, School of Public Health, University of California, Berkeley, California. Tuller reported on the findings of the PACE-trial in 2011 in an article for the New York Times, titled “Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds.” It’s only when confronted with critical comments that he began to delve deeper into the methodological issues and became a vocal critic of the PACE-trial.

ARTICLE: "he [Tuller] was instrumental in persuading the respected science journal Cochrane Database of Systematic Reviews to withdraw a paper that looked at eight randomised controlled studies of exercise therapy for ME/CFS."

COMMENT: Cochrane received a formal complaint about its review on graded exercise therapy by Robert Courtney in 2018. An internal audit at Cochrane indicated Courtney’s criticism to be well-founded. Therefore Cochrane has insisted on a revised version of the review which is currently ongoing. A detailed analysis of the review was published by Vink & Vink-Niese in 2018 in Health Psychology Open, doi: 10.1177/2055102918805187.

ARTICLE: "Sharpe says that the Cochrane editor “wilted badly… under direct pressure” from activists. The editor has since retired, and Sharpe understands that his decision is to be reversed."

COMMENT: This claim has proven to be unfounded. Regarding the decision to potentially withdraw the review, former Editor in Chief David Tovey publically stated, “this not about patient pressure.” An internal email exchange between Cochrane and the Norwegian Institute of Public Health (which houses two of the authors of the review) indicates that concerns about the Cochrane review were raised by multiple experts. “When a collection of experienced and dispassionate colleagues are all making, in effect, the same criticisms”, Tovey wrote in an email, “it is hard to ignore this.” https://wordpress.com/block…/…/mecfsskeptic.wordpress.com/16

ARTICLE: "He maintains that there was nothing untoward or biased about the trial.”

COMMENT: The main researchers of the PACE have designed, studied and promoted graded exercise therapy (GET) and cognitive behavioral therapy (CBT) in ME/CFS, before the start of the PACE trial. A document by the authors explaining the need for the PACE trial, wrote: “We ourselves completed three out of seven of the RCTs of CBT and GET. The therapies and measures to be used are essentially the same as used in these successful trials.” Michael Sharpe was the lead author of “the Oxford criteria” used to diagnose patients eligible for the trial. Another author, Trudie Chalder, was the lead author of one of the trial’s primary outcome measure tools – the Chalder Fatigue Scale. The hypothesis, as specified in the trial protocol, was that GET and CBT would outperform the medical care offered in the control groups. During the study, the PACE team published a newsletter for participants that included information about the new NICE guidelines recommending GET and CBT and glowing testimonials from earlier trial subjects about how much the “therapy” and “treatment” helped them.
 
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I'm not surprised. The Guardian is probably the worst newspaper in the UK. As an Italian who lived in London I was already annoyed by the horrible way they always picture Italy and Italians in general in their articles. They are extremely arrogant journalists. This was enough to remove my like from their Facebook page.
 

Countrygirl

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@Countrygirl - Michael Sharpe appears to be rallying the troops - here's another one in his defense in Psychology Today: https://forums.phoenixrising.me/thr...-science-michael-sharpe-surfaces-again.77162/
Thanks @Mary . I took a quick look.............I think I read it a few days ago. The man is obsessed with us and seems to revel in playing the victim. Do you think he has BPD? I wonder what his childhood was like? Do you think we should club together to get a restraining order? It is like being stalked by the local fruitloop.:( :sluggish:
 

Sarah94

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Thanks @Mary . I took a quick look.............I think I read it a few days ago. The man is obsessed with us and seems to revel in playing the victim. Do you think he has BPD? I wonder what his childhood was like? Do you think we should club together to get a restraining order? It is like being stalked by the local fruitloop.:( :sluggish:
Please don't vilify people who suffer from BPD. It's a mental health disorder it doesn't make someone a bad person. Please don't armchair-diagnose nasty people with mental health problems. That adds to the stigma faced by people with this type of mental health issues (most of whom would never hurt a fly).
 
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Thanks @Mary . I took a quick look.............I think I read it a few days ago. The man is obsessed with us and seems to revel in playing the victim. Do you think he has BPD? I wonder what his childhood was like? Do you think we should club together to get a restraining order? It is like being stalked by the local fruitloop.:( :sluggish:
Its amazing that the whinings of this single individual continue to persist and be echoed across space and time.


And that the substantial body of growing evidence of the profound physical abnormallities found in ME do not even register with him, nor did they "register" in his published "Literature Review"s.
 
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There remains this very awkward problem with journalism: that one looks for some controversy and keeps beating the same drum.

The controversy between Sharpe and ME patients who are not being helped in GB, is of greater interest to the newspaper than reporting on developments in research to solve MECFS, which would then help the patients..

How awkward when the topic is Climate change, and the Journalist must find the Climate Denier and give them equal coverage.

This aspect of reporting DISTORTS the outcome.
 

Mary

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The man is obsessed with us and seems to revel in playing the victim.
It's true! I think the real question is, how can he get so many others to go along with his narrative, and get articles published portraying him as the poor victim who had to stop his important research because of harassment from "activist" (dirty word) patients? It's an insane tale that others seem to just swallow whole. A restraining order would be lovely . . .
 

sb4

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Mainstream media is dying out thanks to internet so they resort to trash "controversy" news written by people who don't know what they are talking about. Guardian is particularly terrible IMO.