Protected: An open letter by top ME/CFS doctors to HHS

26 Sep

Why are ME/CFS sufferers (too tired to think of a more positive word) persecuted like this? Our lives are daily struggles and yet the powers that be don’t seem to be able to grasp that this illness matters in any sense. 250,000 people are estimated to have ME/CFS in the UK. And that’s only counting those actually diagnosed. I suffered for several years before getting finally diagnosed. I am not an anomaly and compared to many my diagnosis came quickly. 25% of sufferers are severely affected, bedridden, tube fed, unable to do anything for themselves; lost dignity and no quality of life. Given ME/CFS is so prevalent and debilitating why is it maligned and side lined? Please reblog and share this post in any way you can. Raising awareness of our situation is vital and the only weapon we have.

Rag and Bone Shop of the Heart

I’m very, very sick with a reemergence of my original symptoms (drenching night sweats, chills, fever, headache, nausea), so I might be gone for a while.

Reposting from Quixotic: My M.E. Blog:

By now everyone in the ME/CFS community (in America anyway) is familiar with the controversy over the U.S. Department of Health and Human Services (HHS) hiring an outside contractor to develop a new definition of ME/CFS. If you’ve somehow missed everything that’s occurred on this front in the past month, here’s the 50 peso version:

HHS announced that they were going to hire an outside contractor to, among other things, redefine ME/CFS and create diagnostic criteria. The leading candidate was a company called the Institute of Medicine (IOM). IOM had previously been hired to conduct similar work related to Gulf War Syndrome and, by most accounts, completely botched the job, leading to much frustration by GWS sufferers…

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