Adam Profile picture
Apr 8, 2021 7 tweets 4 min read Read on X
The psychological approach to ME/CFS the most common post viral illness is largely responsible

In the 70s the Royal Free Outbreak was described as 'mass hysteria', ME was reframed as CFS in the 80s, In the 90s Psychs argued there was no underlying disease and it was reversible.
GET and CBT were developed to reverse deconditioning and change a fear of exercise.

This approach has now been rejected by NICE (draft) and the CDC because of poor quality evidence and potential harm.
Doctors get little or no training on ME/CFS and if the do are taught an incorrect psychological model. The NICE guidelines perpetuate a misunderstanding and are still in place. Most doctors are unaware of the history and biomedical research (>10,000 papers).
The majority of doctors believe ME/CFS is psychological and dont take it seriously. The vast majority of funding has been wasted on behavioural studies which have been unsuccessful (PACE trial) and biomedical research has been severely neglected.
Clips and slides from ME/CFS A Brief History - The Lost Decades video.

Patients, Charities, Academics and MPs have been calling this out for decades e.g.

Ian Swales MP calling out "poor" quality research and "pitiful" funding for ME/CFS in 2011
Also highlighted in this clip of from Kilroy in the 90s, A frustrated parent of a child with ME, Peter White from the PACE trial, inappropriate research and lack of funding also mentioned.

• • •

Missing some Tweet in this thread? You can try to force a refresh
 

Keep Current with Adam

Adam Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!

PDF

Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

More from @ABrokenBattery

Nov 21
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
🧵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
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
🧵 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
Aug 25
🧵 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
Jul 19
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

Did Thread Reader help you today?

Support us! We are indie developers!


This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Don't want to be a Premium member but still want to support us?

Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal

Or Donate anonymously using crypto!

Ethereum

0xfe58350B80634f60Fa6Dc149a72b4DFbc17D341E copy

Bitcoin

3ATGMxNzCUFzxpMCHL5sWSt4DVtS8UqXpi copy

Thank you for your support!

Follow Us!

:(