The newest research about living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS)/fibromyalgia, with personal observations
(the most pertinent parts of long articles will be highlighted for the reader)
On March 4, 1988, I was diagnosed with Post-Viral Syndrome, which CDC soon decreed had to be referred to by the silly name "Chronic Fatigue Syndrome". My symptoms definitely traced back to a severe flu-like illness with a 105 fever for several days in mid-February 1987.
Despite relapses and increasing symptoms, I continued to work full-time as a legal secretary/paralegal -- even when I had no Quality of Life because I had to spend every non-working hour in bed so I could work the next day -- until February 2000, when months of severe sleep disturbance and ever-increasing symptoms (due to sleeping 2 hours or less a night due to the pain) cost me my job.
The doctors and judge didn't want to hear about failed attempts to return to work; they just assumed I don't want to work. "Don't confuse me with facts, my mind is already made up."
Since ADA will not force an employer to provide the accommodations I need, I started my own business so I could lie down whenever I needed to. I do proofreading and editing from home.
Visit www.CFSfacts.org or CFS Facts at YahooGroups or on Facebook if you want to learn the truth behind the myths.
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.