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Apr 15, 2021 8 tweets 4 min read Read on X
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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More from @ABrokenBattery

Jul 12
Lord Winston defending the PACE trial in 2013 as a “really excellent piece of research.”

NICE later rated all the evidence (including PACE) as low or very low quality, withdrew Graded Exercise for #MECFS, and downgraded CBT to be a supportive, not curative intervention.
The Science Media Centre hosted a meeting to help ME/CFS researchers deal with harassment in 2013. Minutes reveal a reluctance to respond to criticism and they classified House of Lords debates as harassment rather than legitimate scrutiny.

web.archive.org/web/2018021713…Image
Full House of Lords Debate
Read 4 tweets
Jun 7
Trigger Warning: This thread documents harmful portrayals of #MECFS on TV. I don’t enjoy sharing these, but it’s important to record how the condition has been misunderstood, trivialised and stigmatised.
Note: The NICE guideline states that professionals should recognise that people with #MECFS “may have experienced prejudice and disbelief and could feel stigmatised by people… who do not understand their illness.”

More info: meassociation.org.uk/wp-content/upl…Image
The Simpsons (1999): S11E03 - an editor refers to “articles about Chronic Fatigue Syndrome” as part of the “chick crap” section, grouping it with astrology and romantic fiction. #MECFS
Read 6 tweets
Nov 21, 2024
New Video: @GeorgeMonbiot describes the treatment of #MECFS as "The Greatest Medical Scandal of the 21st century". Watch the introduction to a new 27 minute explainer video about the scandal from reframing a recognised neurological illness to the withdrawal of harmful treatments.
Watch the full video (27 mins) about #MECFS & the #GreatestMedicalScandal exploring the impact on patients and how bad science was defended by the scientific & media establishment. Includes clips of experts, MPs, patients & news items.

The video is a timeline of key events used to illustrate the scandal. It is broken down into 27 chapters. See image for the list of chapters and how to navigate them.

Timestamps in the description are best, followed by the chapter menu, the progress bar is a bit fiddly. Image
Read 5 tweets
Oct 8, 2024
🧵of news articles, radio and TV about the landmark prevention of future deaths report following the death of Maeve Boothby O'Neill from Severe #ME
Clip from the BBC World Tonight. @BBCJamieCoo talks about the finding from the prevention of future deaths report "The Health Secretary @wesstreeting needs to "urgently address" the "non-existent” care for people with #MECFS & @KarenLHargrave describes her husbands Severe ME
Full segment. BBC World Tonight (5 mins) @BBCJamieCoo interviews @SonyaChowdhury @KarenLHargrave about #MECFS and the landmark future deaths report.

Read 14 tweets
Sep 28, 2024
Highlights from today's BBC Breakfast Interview with @BinitaKane and Sarah Boothby (@swastrosarah) about Severe #MECFS and doctors who have had no training not understanding/listening when they see severly ill patients with #MECFS
TW: Full segment - BBC Breakfast about Severe #MECFS and the death of Maeve Boothby-O'Neill.

Mentions, history, lack of understanding, training and research, no provision and calls for urgent action. @BinitaKane and Sarah Boothby (@swastrosarah)

Associated news articles:
The Times: Coroner to report dangers of ME after Boothby O’Neill death
Maeve Boothby O’Neill’s case highlighted an inability to care for patients who suffer with myalgic encephalomyelitis, or chronic fatigue syndrome

archive.ph/2024.09.27-174…
Read 7 tweets
Aug 27, 2024
🧵 of clips from #BBCBreakfast about #MECFS

@KarenLHargrave's biggest fear is that her husband who has #MECFS following #Covid will deteriorate and need to go to hospital.

"I can't think of many other diseases where the more severe your symptoms are the worse your care is"
"I feel very strongly that if we had done more to understand what is happening in people with ME, we would be in a much better place to deal with all these people who have Long COVID... By one estimate 50% of people with Long COVID have ME"

@oonagh_cousins former Olympic Rower
Dr Weir on severe #MECFS

"they are unable to even get out of bed, and voluntary activities such as speech, chewing, and eating are directly affected by what can be described as an internal battery, which, instead of being charged at 100%, is probably down to about 5 or 10%."
Read 4 tweets

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