I work on a pretty neglected Neuroimmune illness ME/CFS (hence my username) with really low recovery rates whether treated or untreated (~5%).
And the number of “clinical trials” of things like “Graded Exercise Therapy” or “CBT” or “Acupuncture” or [insert random supplement] that claims to “cure” the condition is so large. Except these trials all rely on subjective outcome measures and none are placebo controlled, oh and ofcourse the results never last in long term followup.
Also, I think it’s downright absurd that MECFS gets ignored so much. That shit is way more common than we like to admit and it can turn a healthy person into a massive drain on everyone around them (ignoring their own suffering, of course). Like, you would think we’d be super motivated to fix this shit.
Oh my god exactly.
I work on a pretty neglected Neuroimmune illness ME/CFS (hence my username) with really low recovery rates whether treated or untreated (~5%).
And the number of “clinical trials” of things like “Graded Exercise Therapy” or “CBT” or “Acupuncture” or [insert random supplement] that claims to “cure” the condition is so large. Except these trials all rely on subjective outcome measures and none are placebo controlled, oh and ofcourse the results never last in long term followup.
They only need to last long enough for the results to be published /s
Hey fam, as a person with ME/CFS who works in healthcare, just wanted to say that I appreciate you.
Also, I think it’s downright absurd that MECFS gets ignored so much. That shit is way more common than we like to admit and it can turn a healthy person into a massive drain on everyone around them (ignoring their own suffering, of course). Like, you would think we’d be super motivated to fix this shit.
haha agree, suprised to find so many people knowledgeable about ME and pwME on this page, is there a Lemmy server for it?
Nah we’re just all stuck on the internet, on account of the MECFS :P
Everyone who put on the PACE trial should be exercised to death.