Thursday, November 8, 2012

CFS and the CDC: A Long, Tangled Tale (excerpts)

A good concise history of CFS -- "concise" only in that it's shorter than Osler's Web -- the full article is about 10,000 words.
David Tuller writes a guest post in Virology Blog about the CDC's CFS
research program.


Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale
23 November 2011

by David Tuller

Note: This account draws from interviews, a close reading of a
fraction of the 4608 epidemiologic studies that pop up (as of today;
yesterday it was 4606) on a PubMed search
for "chronic fatigue
syndrome," and a review of many pages of government documents–in
particular the minutes and testimony from meetings of the Chronic
Fatigue Syndrome Advisory Committee to the U.S. Department of Health
and Human Services, one of many such panels established to provide
guidance to federal health officials. Not much here will be a surprise
to anyone who has read the better ME/CFS blogs
, or Hillary Johnson's
authoritative and prodigiously researched 1996 account, Osler's Web:
Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic. Some
readers might know that I have written a number of articles on chronic
fatigue syndrome as a freelance contributor to The New York Times, so
I want to be clear: The Times has nothing to do with this piece. I
want to thank Professor Racaniello for letting me invade his space to
post this very long story.

David Tuller is coordinator of a new concurrent masters degree in
public health and journalism at UC Berkeley. He was a guest on TWiV

Dr. Racaniello said that when he used to question colleagues about
chronic fatigue syndrome, they would argue that it was an imaginary
illness. "Every time I asked someone about it, they would say it
doesn't exist, it isn't a real disease, even as recently as the past
year," he said. "But once you start paying attention and reading papers, this looks like a chronic or hyper-immune activation. These patients have a lot of signs that their immune systems are firing almost constantly."
There is no dispute that exercise can be a very effective treatment
for depression. But people with chronic fatigue syndrome generally
suffer from a distinctive symptom known as "post-exertional malaise"—a
disproportionate depletion of energy following minimal activity that
is not a typical feature of depression. (However, the word 'malaise,'
like the word 'fatigue,' is a complete misnomer; post-exertional
malaise is much closer to a serious crash or relapse than a Victorian
fainting spell.) An emerging field of research—much of it taking place
at the University of Utah and University of the Pacific in Stockton,
California–indicates that people with CFS suffer from problems with oxygen consumption, energy production and muscle recovery. So it's not surprising that increasing activity levels could lead in some or many cases to a prolonged resurgence of their symptoms rather than the
improvement predicted by proponents of graded exercise therapy.

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