redbluegreen4066

great question! people with my illness suffer from a very severe form of fatigue that leaves us unable to carry out activities of daily living. it's not technically paralysis, although for the very severely ill, it can certainly feel that way.

i've heard anecdotes of very sick patients being unable to so much as lift a spoon and getting their nutrients thru a feeding tube. there's a young man named whitney dafoe who is very ill and has been living this way for years now.

a picture of whitney, https://scontent-lga3-1.xx.fbcdn.net/hphotos-xpt1/v/t1.0-9/12963940_860120144117059_4055772743451737093_n.jpg?oh=956293e36700212e13496ff84fb16cba&oe=57B47800 bearing a startling ressemblance to an AIDS skeleton.

i've also heard anecdotes of people having uncomfortable "crawling" sensations on their skin but my experience was of this awful, dull, insidious wholebody pain that never quite left me. people live this way for years and years and somehow manage not to commit suicide.

hope for a cure

we think ME/CFS is at heart something like AIDS or chronic lyme: the reactivated herpesviruses seen in so many patients are a result of immunosuppression. not enough to kill you but enough to make you very miserable for a very long time.

llewellyn king is literally the only journalist who has ever given us our dues over the years although someone named stephanie land published a good piece in huffpo recently: http://www.huffingtonpost.com/-stephanie-land/chronic-fatigue-syndrome-_1_b_9513498.html

llewellyn's piece: http://cfsresearchcenter.org/index.php?option=com_k2&view=item&id=80:chronic-fatigue-syndrome-hidden-in-plain-sight&Itemid=435

as for the neglect my guess is a potent mixture of misogyny, professional laziness, "fiscally responsible" rightwingers eager to get us off welfare, and the underhanded work of a certain psychiatric cabal (simon wessely from britain has an especially bad rep within the community). ME/CFS came to light about the same time as AIDS, with all the same people making the decisions, and if you ever read The Band Plays On you should be aware of the massive resistance to doing anything for those sick and dying of the illness.

if you're feeling especially militant meadvocacy.org has some instructions for contacting your congressperson. we've been yelling at the NIH and CDC for ages now urging them to act, but they don't, and we think it's because there aren't enough of us (well enough to lobby congress anyway)! would appreciate some outside help.