The Tangled History of Chronic Fatigue Syndrome
The XMRV Discovery Series
Since it first caught the attention of doctors and national health officials, the condition that came to be called chronic fatigue syndrome has had a twisted, tangled and downright bizarre history. Because I'm a relative newcomer to this scene, I've largely stayed away from in-depth looks at this history that, in many ways, could actually cause more depression in people who don't need anything else to be depressed about.
In light of the possibly tremendous XMRV research that recently came out, complete with the suggestion of a new, scientifically based name, I thought it was a good time to look back at how "chronic fatigue syndrome" came to light and got its much-hated name. For this, I'm turning to a woman who's been in the trenches for a long time and knows all the twists and turns of this story -- Hillary Johnson, author of Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic. She wrote a wonderful op-ed piece that was published in the New York Times:
It's a great read, with plenty to offer in terms of science, history, politics and perspective. Hillary has been among the greatest advocates for people burdened with the chronic fatigue syndrome label and she's got a lot to teach us all.
Also See: The XMRV Discovery Series
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God bless Hillary Johnson !
I was in tears reading her riveting New York Times Op-Ed this morning.
Thank you so much, Ms. Johnson, for your clarion call.
Ditto on the above….”God Bless Hillary Johnson”.
Also, Thank God for the new research that’s being done on behalf of all of us patients. I’m 56 now and I started feeling ill with fatigue, headaches and other symptoms in 1984. The pain and suffering I’ve been through since then have been unbelievable but somehow I’m still hanging in there. I’ve been unable to work for the past three years and am now on SSD.
I was diagnosed with fibromyalgia in 1986 after suddenly developing terrible pain in my legs. It soon spread to my whole body and it’s remained there since then, constant and nonstop. 23 years of constant, severe body over my whole body. But at least this diagnosis got a little bit more respect than “chronic fatigue syndrome”. I even stopped telling people I had CFS because of the social stigma. At least they could sympathize more with a diagnosis of fibromyalgia, even if they never heard of it and didn’t understand it.
Okay, now I can finally come out of the closet. I have chronic fatigue syndrome, or shall I say for now, “X-associated neuroimmune disease”. I hope there will be no further delays, governmental or otherwise, in research of CFS and fibromyalgia.
IT’S TIME TO END ALL THE SUFFERING!