Thread of clips from Michael Sharpe's retirement interview on the Today programme - BBC Radio 4 in 2019.
He describes "A small group of campaigners."
At the time over 80 charities (almost all of them) and 100 academics signed an open letter calling for PACE to be reanalyzed.
He claims that campaigners "stalk researchers" and mentions "threats of violence"
When QMUL refused to release the PACE data it went to tribunal. A witness compared ME/CFS activists to animal rights groups and claimed there were serious risks of violence.
However, the tribunal concluded that "It was clear that his assessment was "grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder”
He describes the Journal of Health Psychology as a "campaign" and its very important "we don't have science bent by campaigning"
The journal dedicated an entire issue to understand the problems with the PACE trial. 40 experts from both sides of the debate were invited and commentaries were peer reviewed. The PACE authors tried to have sections removed because a peer was a patient & didn't want to engage.
Michael Sharpe claims the objections to his research are because the application of psychological treatments says to the patients your illness isnt real and this "fuels the hate".
He fails to mention the harm caused by his treatments. Over 50% of ME/CFS patients report that Graded Exercise makes them worse (11 surveys/18,000 patients) Watch this clip of Emma Shorter describe her experience in Scottish Parliament which left her in a wheelchair.
Or the problems with the research (e.g. moving the goal posts, no objective improvement, promoting treatments during the trial.... ). NICE have now graded PACE as either low or very low in quality after an extensive 3 year review.
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🧵of clips @GeorgeMonbiot talking to @davidtuller1 about his recent article where he describes the psychologisation and treatment of #MECFS as "the greatest medical scandal of the 21st century."
@GeorgeMonbiot talks about the poor quality of life people with #MECFS experience and how the psychological approach led to attitudes such as a nurse in one medical paper saying ‘the bastards just don't want to get better’
@GeorgeMonbiot talks about Professor Simon Wessely being a founding member of the Science Media Centre, and how journalists parrot the biopsychosocial model of #MECFS and how the story became about harrasament of researchers instead of patients being badly served
Doctors have been taught to gaslight patients with #ME for decades. This video from the 90s teaches GPs that patients are frustrating to work with because they are mistaken about the cause of the illness and can often engage in arguments.
It downplays the severity, dismisses the possibility of it being caused by a virus, and essentially describes it as psychological. Patients may have had a virus but it's gone, cleared the body, and the illness is basically perpetuated by a fear of activity and resting too much.
This approach to ME, Graded Exercise and CBT, was withdrawn by NICE in 2021 because the research was flawed and patients reported it was harmful. All of the research was graded 'low' or mostly 'very low' quality.
New: Jon Ronson Things fell apart episode on Judy Mikovits, her paper on XMRV and #MECFS that was retracted and how she became involved in the conspiracy theory film Plandemic.
I know @JonRonson is interested in ripple effects.
Simon Wessely pioneered the approach to #MECFS in 1988. His paper rejected the conventional view that patients have an ongoing disease, and argued that they are simply unfit due to being inactive.
QT -The Guardian calling out The Science Media Centre
🧵The SMC also has a long record of promoting & defending Graded Exercise & CBT for #MECFS. These treatments were withdrawn by NICE in 2021 because they are ineffective & harmful. All the evidence was low or very low quality.
George Monbiot has written about #MECFS & how the "establishment closed ranks around bad science, defending it from legitimate questioning and criticism."
He mentions the involvement of the SMC in this clip.
The treatments and approach were pioneered by Simon Wessely who was also a founding member of the SMC, sat on the board and has been their scientific advisor.
Hi @ellapickover, @eblackburne, I have put together a quick thread in response to your recent article 'New hope for 'incurable' disease that leaves sufferers shattered'. There may be some things you are not aware of.
Its not new it was proposed for ME in 1989 (Chalder from the recent paper was an author) It has been the dominant approach for the last few decades, until Graded Exercise and CBT were withdrawn by NICE in 2021 because they are not effective and harmful.
The 3 year comprehensive review by NICE found all the evidence for Graded Exercise Therapy (GET) and CBT was of "Low" and mostly "Very Low" quality. This blog by Prof Brian Hughes provides more detail.
Thankyou @OllyMann, @holdenfrith, @leafarbuthnot and @harriet1marsden for covering #MECFS and the new Government Plan. I just want to highlight a few things you may not be aware of.
Post Exertional Malaise (PEM), is the hallmark symptom of ME which means patients deteriorate following even minor activity. Exercise makes patients worse by definition. Pulitzer prize winner Ed Yong gives a good description of PEM.
The article opposing NICE was largely written by Peter White lead author of the PACE trial. NICE graded all research (inc PACE) as low or very low quality. Opposition is from a minority with close links to the research or researchers. All charities support the guideline.