The M.E/CFS thread

my parents both have it, along with major depression and a host of other rehumatoid arthritises and codependencies. It's been really tough for them - tough to watch too - as well as deal with the surrounding bullshit (just get out of bed and get some exercise, you'll be fine) etc - you know it.
I'm yet to see a decent cultural study of it, ie what kind of changes occur in people's lives and how it forces them to rethink their identities and attitudes and aspirations.
New research suggests very small amounts of exercise daily are most beneficial, but tendancy is to overdo it when one feels good.
Good luck, and as I say to my folks, get some good rest

Not sure what to say, as this is a very personal subject for me. But thought I'd post a link to Laura Hillenbrand's New Yorker Article, which is the best personal-experience writing about CFS that I've seen. It's long, it's depressing, but I'd highly recommend it to anyone who might want to better understand the devastating effects this illness can have.

A thought: if you haven't seen an endocrinologist yet, see one. A good one. I went to the fucking Mayo clinic and they only diagnosed me with POTS/NCS (which turned out to be untreatable, yay). The primary there said I had CFS but they didn't put it on my records, probably because of the ongoing stigma.

Years later, I'm seeing an endo and they've discovered a growth on my brain from some specific endocrinological MRI and there are possibilities for treatment. Right now I'm a mess from these drugs, but at least there's hope.