An open letter by top ME/CFS doctors to HHS

This is well worth a read and please sign the petition – it is scary to think that there is active pressure to move backwards away from finding a cure, or at least effective treatment, for this horrible disease.

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…

View original post 143 more words

How To Throw A 5th Birthday Party Of Scientific Awesomeness!!

If I had kids I’d be doing this!

Dorkdaddy.com

title

letter The weeks of summer were slipping by. The first day of school was on the distant horizon and although the kids were blissfully ignorant, the parents knew there was one last major item of business to take care of before launching into full-on get-ready-for-school mode. Episode V was turning 5, and the kid needed a birthday party before the whole world disappeared into backpacks, class rosters, lunch boxes and new shoes.

Finally we had to acknowledge that we wouldn’t procrastinate any longer. A party needs guests, and that means invitations, and that means giving people some notice ahead of time. UnDorkMommy sat down at the computer to get the E-vite cranked up and asked Episode V “So what kind of birthday party do you want to have?”

The boy was lost in play at the moment, and could only offer 10% of his total mental bandwidth to the conversation. “I don’t…

View original post 3,499 more words