People often wonder why such a big deal is made about exercise being recommended for #mecfs. I mean, it’s just exercise, right? How bad can it be?
An analogy of a broken leg.
A thread 🧵
Simone
@PhoenixMe
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Bed-bound activist with severe ME/CFS. One of the #MillionsMissing. If I had any spoons, I'd be dangerous.
#AusPol, #USPol, climate justice, social justice, crochet. Views expressed are my own.
Boonwurrung country, Australia
For decades, research funding into #mecfs has gone into studying rehab programs which will never fix a broken leg, rather than how to test or treat the broken leg. This has started to shift in recent years, but some still insist that rehab should be the focus.
But when people with ME/CFS say the rehab makes them worse, they’re told they didn’t do it right or are accused of not wanting to recover. When they object to treatment which makes them worse, they’re told the treatment is better than nothing. But harmful treatment is never better than nothing.
It’s clear from this analogy that, not only will the rehab not fix the problem, it will absolutely make the broken leg worse. And it will hurt a lot!
Because doctors don’t think there’s anything broken, people with #mecfs are told to not use crutches (use it or lose it), not rest their leg, and that rehab will fix the problem.
There is currently no diagnostic test to determine if there’s a broken bone, & most tests come back normal, so doctors assume nothing’s broken. But tests used in research show the bone is definitely broken, but there is no plaster cast treatment available.
In #mecfs, people are being prescribed exercise to treat a broken leg, because the secondary effects of the condition (deconditioning) have been mistaken as the primary problem.
The main treatment for a broken leg is plaster cast to allow the bone to heal. Sometimes, after the cast comes off, you need rehab to rebuild your leg muscle because it’s been immobilised for so long. The rehab isn’t treating the broken leg, it’s treating the secondary effects of the condition.