Thursday, September 22nd, 2016 11:24 am
Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back

From all accounts the effects of the PACE trial were most horrific in the UK, but the idea that my fatigue is all in my head and is best treated with exercise has come up repeatedly for me, too. Ironically it's actually made me exercise less: I'm not willing to try exercising without the help of a medical professional I trust to say if I'm pushing too hard, and I've yet to meet any. They all set the baseline for "mild exercise" at a level I know would make me sicker, and have seen other people with cfs harmed by listening to this kind of advice.

I'm also really glad none of the psychologists or psychiatrists I've seen subscribed to the "tell patient to ignore their understanding of their own health" approach to CBT. Blech.

The "you don't have exercise intolerance you're just neurotic about exercise and need to believe in yourself" attitude is so appealing to able bodied people, and can seduce people wth cfs, too. For a while. Back when [ profile] cfids_me was more active we'd always have people touting the Lightning Process.
Thursday, September 22nd, 2016 04:39 pm (UTC)
Thanks for that link - I'm glad the corrections are finally getting out there. I've encountered a few people who like the Lightning Process, too.
Friday, September 23rd, 2016 09:14 am (UTC)
I'm pretty sure that's the one where you're also not allowed to tell anyone about what it involves in any detail, either (otherwise it won't work and it will be your fault).
Thursday, September 22nd, 2016 10:40 pm (UTC)
My current physio actually shakes his finger at me and tells me not to overdo it. Astonishing but reassuring.