A reboot for chronic fatigue syndrome research

[jesse_the_k]

Excellent NATURE article with pocket history of myalgic encephalomyelitis/chronic fatigue syndrome: how it's been ignored, the crap we patients have put up with, and how it may now be getting the right attention paid. With many references for further research.

Good first read for family, friends and medicos who need schooling.

Nature 3 January 2018
A reboot for chronic fatigue syndrome research

Research into this debilitating disease has a rocky past. Now scientists may finally be finding their footing.

https://www.nature.com/articles/d41586-017-08965-0

Comments

[wendelah1]

Well, that's pretty exciting. About damn time, too.

[jesse_the_k]

Yeah. I got sick in 1988, and watching people suffer for decades while being scorned has made me one angry crip.

(This is probably not news.)

[j00j]

Thanks for sharing this! I have another friend who hasn't been able to leave bed in a couple years, and had to move back with her parents finally. I'm really bummed rituximab doesn't seem to have worked out, but at least we are getting into more serious science.

[jesse_the_k]

Ugh, move back with parents sounds like the worst. Being bed-bound is frustrating enough; trying to maintain an adult-adult relationship when you're back to infant-level functioning sounds really difficult.

A good point the article makes is that the mob of folks with the CFS/ME diagnosis probably don't all have the same illness going on. So perhaps rituximab will end being effective for some of the people who currently have the diagnosis, and turn out to have some other impairment in common.

[sonia]

Thanks for this link! I already passed it along to a client. Glad to hear the illness is finally being taken seriously by the scientific community!

I'm wondering if it will turn out to be something like this, where an antibiotic was causing a mysterious syndrome. When a Medical “Cure” Makes Things Much, Much Worse by Jeanne Lenzer.

Indeed ...

[jesse_the_k]

I'd already seen that article, and wondered the same thing.

I just got back from seeing a movie with an old co-worker. She's suffered through at least two completely iatrogenic miseries: a prosthetic knee replacement which failed and had to be redone, and this year rhabdomyolysis, a statin side effect which has permanently damaged her kidneys.

Sometimes I'm glad that there hasn't been "official" treatment for CFS. Seeing the impacts of aggressive chemotherapy for RA and cancer, I feel like I've lucked out.

Re: Indeed ...

[sonia]

I'm sorry to hear about your co-worker's miseries! Yeah, a lot of western medicine seems very violent. I hear you about lucking out - I've also been kind of wryly grateful that western medicine doesn't have a lot to offer for the things that are wrong with me.