Wednesday, February 11, 2015

Goodbye chronic fatigue syndrome, hello SEID | Science/AAAS | News

After reviewing more than 9000 scientific studies, hearing testimony from experts, and soliciting input from the public, the committee concluded that "the name 'chronic fatigue syndrome' has done a disservice to many patients," calling it  "stigmatizing and trivializing." 
Systemic exertion intolerance disease does not exactly roll off the tongue. IOM committee member Ronald Davis, a biochemist who heads the genome center at Stanford University in Palo Alto, California, says the group considered about 100 options. "Boy, did we  struggle with that," he said. "It's hard to come up with a good name, and I don't think this is a perfect name."
"I hope it will get rid of those who may not believe it," Davis said. "They'll have to keep it to themselves. It's incompetence and it's malpractice."
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Got that, folks?  There are more than 9000 studies, worldwide, that show physical abnormalities.  It's not just a figment of our imagination.  It's real, it's very real.
I hope that this will allow us to report every doctor who has ever disparaged us for "incompetence and malpractice" and have them forced into an educational program that teaches them how to be sensitive to patients' concerns. 
And if you have any doubts how serious it is, this moment is bittersweet, coming on the heels of the death of a patient/activist in her early 30s just a few days ago.  Yes, it kills.

1 comment:


I will never call my illness anything but what it is (and what gets us to the money) --> NON HIV AIDS.

"Q. If HHS gave you power to re-name CFS, what would you call it?
A. {Dr. Mikovits} Non-HIV AIDS..."