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Severe ME patient currently on a 10% battery, the gas goes out more than I do. I also compile ME/CFS Awareness videos.

8 Apr, 7 tweets

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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