Sunday, October 11, 2009

Naming the Disease

What's in a name? In this case, a whole lot of pain.

The disease in question has had many names over the years, from the insulting "yuppie flu" to the much more accurately descriptive "chronic mono" or "chronic Epstein-Barr Virus" or "post-viral syndrome."

The term "Myalgic Encephalomyelitis," or M.E., was in widespread use throughout the world until the US agency the CDC decided to promote the spread of disinformation and misunderstanding - and discredit both victims and researchers - with the appallingly misleading name, "chronic fatigue syndrome," or CFS.

Desperate victims dreamed up the acronym CFIDS, for "Chronic Fatigue and Immune Dysfunction Syndrome," to try to add some actual useful description to the CDC's loathsome misnomer, but that term never really caught on among either the general public or medical and health care professionals, who for the most part to this day persist in referring to this devastating disease as "chronic fatigue."

More recently, people suffering from the disease have begun to use a combination of acronyms, such as ME/CFIDS or CFS/ME/FM (for the related illness Fibromyalgia), but I feel this really only makes ourselves feel a little better; nobody else seems to get it. Many other names have also been used, but tragically the "chronic fatigue" misnomer is the one that stuck.

Now Hillary Johnson says:
The real scientists have arrived and they'll be studying XMRV-associated neuro-immune disease, a.k.a., XAND.

The name ["chronic fatigue syndrome"] ginned up [by the CDC] in Atlanta in 1988 to make sure disability insurers would not be required to pay out on disability policies and the public would assume the malady was a new category of mental illness? One can imagine, or simply hope, that the phrase is about to be jettisoned into outer space where one can fantasize it entering the band of space trash circling the earth. For months, the team at WPI has been playing around with names. In lighter moments, their favorite became “I.T.V.S.,” the acronym for, “It’s the Virus, Stupid.”
So should I rename this blog "XAND Watch" or "ITVS Campaign"? Or maybe "XMRV Hunter"? How about just "Antidote for Stupid"?

Let's hope somebody comes up with a more catchy - and compelling - name soon.

2 comments:

  1. A foremost expert on CFS, Dr. Jacob Teitelbaum, has just put out a new book called Beat Sugar Addiction Now: http://endfatigue.com/. It is written in a simple style and outlines his easy to follow, multi-step plan. He begins by identifying 4 main types of sugar addicts and then outlines a specific plan for each type of addict to follow. He explains how sugar plays into the problems suffered by each kind of addict and goes into detail when clearly and succinctly explaining how to beat the cravings. While Teitelbaum does not provide recipes or meal plans, he does give guidelines for healthy eating and lists of recommended foods as well as the glycemic index for many common foods.This book would probably be helpful not only to people attempting to lose weight, but also to those with illnesses such as Type II Diabetes, Fibromyalgia, and Chronic Fatigue Syndrome, just to name a few. Though Teitelbaum is a medical doctor and is clearly coming from a medical background, he writes in layman's terms and creates a book that will be easily understood by most people.

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  2. I see the above exact same post on several blogs re: CFS, so I can only assume this is spamming on behalf of Teitelbaum, who is NOT a foremost expert on CFS. He's just another opportunist trying to make money off other people's suffering.

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