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Adam Profile picture
@ABrokenBattery
Sep 29, 2023 • 8 tweets • 5 min read • Read on X
Scrolly
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 These treatments were withdrawn by NICE in 2021 because they are ineffective & harmful.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.

And more in his thread


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.



me-pedia.org/wiki/Wessely_s…
simonwessely.com/Downloads/Othe…
Image
PACE was the largest study of treatments for #MECFS. A re-analysis paper that found Graded Exercise & CBT are not effective.

The paper used the pace authors original outcomes (changed mid trial) and data released by FOI.

Article by George Monbiot

theguardian.com/commentisfree/…


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The SMC released a fact sheet to journalists to try and discredit the paper before it was published. It described PACE as a "good quality trial", and said papers critical of PACE are published in low impact journals.



web.archive.org/web/2018032205…
meassociation.org.uk/2018/04/forwar…
Image
The Journal of Health Psychology dedicated an entire issue to understand the problems with PACE. Experts overwhelmingly agreed it was flawed, and the results were unreliable.

The SMC published a number of 'expert reactions', all defending the trial.

sciencemediacentre.org/expert-reactio…
Image
I previously put together a thread about the problems with Fiona Foxes chapter on #MECFS from her book about the SMC.

Further reading




margaretwilliams.me/2013/role-of-s…
healthcarehubris.com/post/media-sil…
usrtk.org/industry-pr/sc…

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More from @ABrokenBattery

Adam Profile picture
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
Adam Profile picture
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
Adam Profile picture
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
Adam Profile picture
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
Adam Profile picture
Aug 25, 2024
🧵 of clips from the LBC segment about #MECFS and Simon Wessely yesterday

Natasha Devon reading out @GeorgeMonbiot article about #MECFS and the #GreatestMedicalScandal mentiond Wessely, PACE, & the Science Media Centre that portrayed patients as abusive.
Wessely's biopsychosocial model makes ME patients unreliable witnesses to their own bodies. The model says patients are catastrophising and misunderstand the symptoms of recovery and think this an ongoing illness instead of normal aches and pains of recovery - @JohnTheJack 🔥🙏
I spent the first 20yrs in mental health units because of the biopsychosocial approach to #MECFS. I still have PTSD from that period. I have had water poured over me in bed in the last 10 years by a nurse. I shouldn't get PTSD every time I go to hospital. I shouldn't have water
Read 5 tweets
Adam Profile picture
Jul 19, 2024
Full article: My child died of ME’: a scandal waiting for its Post Office moment

Sean O’Neill is dreading his daughter’s inquest but hopes it will show the nation how people with the condition are routinely stigmatised and ignored by the NHS

archive.ph/2024.07.19-150…
Full article: Sajid Javid: Labour must deliver on ME as patients suffer without a cure

The former health secretary’s call to action coincides with a landmark inquiry into the death of Maeve Boothby-O’Neill...

archive.ph/2024.07.19-150…
NHS treatment for ME patients to be examined

Maeve Boothby-O’Neill, 27, who died in October 2021, faced barriers to receiving proper care

telegraph.co.uk/news/2024/07/1…
Read 59 tweets

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