Date: 2017-07-25 02:40 am (UTC)
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
From: [personal profile] davidgillon
Timely as an friend who had an ME/CFS diagnosis, until they turned around and said 'whoops, no, actually it's not all in your head, it's mitochondrial disease' (which has a genetic test, and this reclassification is happening a lot) just linked to a (now closed) petition on this - https://www.change.org/p/petition-the-nice-guideline-for-cfs-me-is-unfit-for-purpose-and-needs-a-complete-revision/naftaExp1/real_control?recruiter=77640429&utm_source=share_petition&utm_medium=facebook&utm_campaign=autopublish&utm_term=share_twitter_responsive&utm_content=nafta_share_post_copy_en_5%3Areal_control. The UK's position on ME/CFS is utterly dominated by the 'it's all in your head' school, led by the now president of the psychiatrist's professional body (really, how do you rationally elect as president of your profession someone whose main claim to fame is provoking open warfare with the patient community?), with the core of evidence for their graduated exercise treatment protocol being the now utterly discredited PACE trial. NICE, the NHS agency which defines country-wide treatment protocols, is reviewing the PACE-based graduated exercise protocol, and it's recommendation is apparently to leave it in place, and ignore any input from the ME Association.
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