https://www.healthrising.org/forums...organization-joins-the-fight-for-me-cfs.5525/This one action demonstrates why it's so important to have a full-time professional advocate for chronic fatigue syndrome (ME/CFS). The National Organization for Women (N.O.W.) is not a small organization; it has 550 chapters in all 50 states. It's a natural ally for a disease that's a) dominated by women (b) can't get any respect and (c) is chronically underfunded, yet until N.O.W. it's never taken up the fight for women with ME/CFS. (My guess is that it's never been asked...)
That's a little shocking. There's no mystery about the discrimination going on at the federal level. The NIH is willfully ignoring diseases that are common, predominantly effect women, cause high amounts of pain, fatigue and disability, but rarely kill. There's ME/CFS ($11 million/year) which whacks people harder than just about any other disease, FM ($9 million/year) which affects ten times more people (and gets less money), and then there's migraine ($14 million/year)...the third most common disease worldwide - which gets pennies per patient per year.
These are the last great group of underserved women's diseases, and they deserve the National Organization for Women (N.O.W.'s) help. Women have the right for their health needs to be taken seriously both at the doctor's office and at the research level as well.
Now N.O.W. - the most powerful grassroots women's advocacy group in the U.S. - is finally stepping up to the plate for ME/CFS. Thanks to the work of Bobbi Ausubel and Emily Taylor of The Solve ME/CFS Initiative (SMCI), N.O.W. has produced a powerful letter urging Congress to add back in CDC funding (it's been zeroed out again), to increase research funding to appropriate levels and to make ME/CFS eligible for additional Congressional funding.