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!
I’m from Puerto Rico and they diagnostic me with Fibromyalgia/CFS since 1997. This sikness is worth that having a Cancer ( nobody knows how to treated). Medication are very expensive, I don’t cualify for SS because I need 3 yrs (I have 7yrs). I have to go for treatmeat in Atlanta, now related XMRV blood test. I am broke, suffering nobody understand who you feel, I don’t know what else I can do. The goverment here do not know or the health Dept. About this painfulness condition. Jackie
Wow, I have to agree with another comment on being literally in tears while reading this. I have been suffering with this for twenty years, still trying to plug along working jobs that put me in bed every moment…and I mean every second of me being off. I am unconscious every day I am off. A few months ago I hit a brick wall and have not been able to get out of bed more than five hours and if I do (to go to a doctor appt) I am in bed for two to three days 24/7 thereafter with a sore throat, swollen lymph nodes, chronic pain and exhaustion. This is no way to live!! Its about time we get recognition and more painstakingly serious research in the works! No one understands us because we are at home in bed and have no energy to be out in the real world. Our lives have been stolen and no one cares. We lay here day in and day out in pain physically and mentally from the loss of what we could have been not to mention the loss of family and friends who cannot understand. At times I would beat myself up wondering if I am crazy and lazy!?! I am not, and it is a blessing that one family who loved their daughter put the money into research to share with all of the rest of us suffering with this same virus. GOD BLESS THEM!!! THANK YOU FROM THE BOTTOM OF MY HEART AND SOUL!
The CDC’s “working-hypothesis” in 1985″ was “CEBV Syndrome; “EBV+stress”, and they clearly saw no reason to question or change it.
Then the “Yuppie Flu” hit a small resort town lake Tahoe, and two local doctors became involved.
Dr Daniel Peterson and Dr Paul Cheney were resourceful, ordering brand new tests that had never been available before.
By 1987 Dr Cheney’s evidence had become completely overwhelming, and the CDC was left with no choice but to abandon CEBV Syndrome and create a new paradigm that incorporated the new evidence that explained WHY “chronic EBV” was inappropriate.
Instead, they pulled off one of the most amazing sleight-of-hand tricks in the history of medicine.
The CDC gave the APPEARANCE of “good science” by purportedly abandoning CEBV Syndrome due to the new evidence, but they didn’t explain WHY.
By “innocently” omitting all of it from the 1988 Holmes criteria, left an “evidence gap” for the doctors to fall into, which instantly allowed the “new syndrome” to revert back to the former “CEBV Syndrome” conceptual framework, as if all that had been found was that people could succumb to stress even without EBV.
At the time, I didn’t think there was any way that the medical profession could be so easily fooled by a simple act of omitting immunological evidence that the syndrome was based on.
After all, isn’t discerning the significance of such data THEIR JOB?
I had believed that if doctors saw so much as ONE piece of Dr Cheney’s evidence, and understood that “CFS” was coined in response to this VERY data, that they would never again think of the syndrome as an entity “devoid of evidence” and for which there “are no tests”.
Perhaps that is why people “Don’t believe in CFS”, for…. the very act of believing contains the unavoidable corollary that if Dr Cheney’s evidence truly exists, then the CDC must have deliberately tricked doctors… and that nearly all doctors fell for the trick.