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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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"
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."