![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
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![[livejournal.com profile]](https://www.dreamwidth.org/img/external/lj-community.gif)
cfids_me was more active we'd always have people touting the Lightning Process.
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
cfids_me was more active we'd always have people touting the Lightning Process.Tags:
no subject
no subject
I haven't lately but remmeber it all feeling a bit cult-ish and "if you fail it is 100% your fault for doubting the process".
no subject
:s
no subject
Haha, yes, that's right! I'd forgotten! "I did this amazing thing and it made me heaps better" "How does it work? What does it involve?" "IT'S A SECRET. But it works! I swear! You should pay lots of money and do it too!"
no subject
no subject
Nice!