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.

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More from @ABrokenBattery

24 May
Trudie Chalder (PACE trial) is training health professionals on Long Covid. Describes Post Exertional Malaise as "Health anxiety" and an "Extreme behavioural response" states "Exercise is clearly not damaging" and recommends "Increasing exercise"
#LongCovid #MECFS
Long Covid problems with exercise
jospt.org/doi/full/10.25…

Exercise & ME/CFS - lessons for Long Covid (inc PACE trial)
healthaffairs.org/doi/10.1377/hb…

Long Covid overlaps with ME/CFS video - Why exercise is harmful with testimony from harmed patient
Trudie Chalder also misrepresented one of her studies in her presentation by missing out the 12 month follow up data. Including it would have shown no significant difference.
Read 5 tweets
15 Apr
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”
Read 8 tweets
5 Apr
Thread of some quotes from Michael Sharpes #LongCovid presentation

"I help to set up a Post Covid clinic in Oxford which is based in a respiratory department but which is multiple disciplinary. And so I've had some clinical experience of the kind of patients that we're seeing"
"What's very striking in some of our patients is what you might call health anxiety. They are very focused on bodily symptoms, they're worried."

"Anxiety is prevalent in this population"
"A third to a half of patients have significant anxiety and because of that fearfulness they may avoid going out and they may spend a lot of time seeking information about their condition because it's known to be a little mysterious and they may seek a lot of medical care"
Read 25 tweets
16 Mar
Thread of quotes from Respiratory Consultant Dr Paul Whitaker #C4Dispatches episode on #LongCovid :

"The definition of long Covid is people having symptoms going on beyond 12 weeks. The number of people who have had Covid in the UK makes this an almost overwhelming problem."
"We do chest x-rays, CT scans and full lung function tests. Some people have evidence of scarring, some people have evidence of an inability to absorb oxygen properly. But most people have normal tests."
"For these people it really comes down to fatigue, to muscle strength and also to what the physiotherapists call dysfunctional breathing, so after Covid people breathe a little bit differently."
Read 10 tweets

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