Saturday, February 6, 2010

CDC reassigns controversial head of chronic fatigue research February 5, 2010

CDC reassigns controversial head of chronic fatigue research
February 5, 2010 --

The Atlanta-based CDC has reassigned its chief researcher into chronic
fatigue syndrome, a longtime target of scientific organizations and
patient advocacy groups around the country.

Researchers in Nevada last fall reported a strong correlation between
chronic fatigue syndrome and XMRV, a retrovirus related to the one
that causes AIDS. The potential breakthrough has excited the 1 million
or so Americans with CFS who are looking for treatment.

The CDC's research program, led by Dr. William C. Reeves, had no role
in that study, and Reeves was dismissive of its findings. Critics said
that was because the agency had wasted $100 million on looking for a possible psychological explanation for CFS and dismissing outside research that looked for a viral cause.

Finally, last fall, a CFS Advisory Committee called on Health and
Human Services Secretary Kathleen Sibelius to install "progressive
leadership" to direct CDC's efforts to find a cause and cure for the
disease. The panel did not identify Reeves as the obstacle, but
minutes show the committee had discussed whether to name him.

The International Association for Chronic Fatigue Syndrome, a
500-member group of medical professionals, has repeatedly challenged
CDC's focus and its new five-year plan for CFS research. Its
president, psychologist Fred Friedberg, testified in October:

"After 25 years (and over $100 million) of CDC research, chronic
fatigue syndrome remains a stigmatized illness without substantive
progress on public health policy or objective diagnosis and treatment.
And their new five-year, $25 million plan fails to inspire any
confidence that change will occur."

CDC spokesman Tom Skinner said today he had "no direct knowledge" of
the reasons behind Reeves' reassignment, other than the agency's
belief that his expertise was "a good fit" for his new role.

"As far as his salary goes, it's a lateral move for him," Skinner said.

Starting Feb. 14, Reeves will be senior advisor for a new mental
health surveillance program that will explore how various diseases and
conditions affect mental health. Virologist and cancer researcher Dr.
Elizabeth R. Unger becomes director of the Chronic Viral Diseases
Branch (CVDB), which includes the CFS program, on an interim basis.

"Looking for a permanent director will commence as soon as possible,"
Skinner said.

The transfer comes on the heels of the CDC's reassignment last month
of Dr. Howard Frumkin, who had run the CDC division that deal with
public health problems associated with formaldehyde contamination in
trailers provided to victims of Hurricane Katrina. Frumkin became a
special assistant to the CDC's director of Climate Change and Public

CFIDS Association applauded the leadership change in the CDC's
research into the disease:

"The CFIDS Association of America, other organizations and advocates
have vocally supported new program leadership to effect a more robust
research effort at CDC. This staffing change has the potential to
significantly advance CFS research beyond the agency's intramural
program and to seize scientific momentum generated by recent
* * *
$100M wasted in 25 years.  Divide that by the 4M Americans CDC says have CFS.  That's a whopping $1 per patient per year.  How do they expect to find anything on that budget?  By contrast, cancer research gets hundreds of dollars per patient per year, and have made great strides in changing cancer from an automatic death sentence to something that's curable if caught early enough. 
Meanwhile, Dan Peterson continues to stress that not one single CFS patient has ever been "cured"; we go into remission, but the threat of relapse is always there.  After 12 years of remission, I thought I was bulletproof, then spiraled down into a horrible relapse that's now in its 10th year.  Mostly due to doctors who bought into the CDC position that I was just depressed and therefore all they had to do to comply with accepted treatment was to keep feeding me anti-depressants until they found one that worked.  Never mind that I was joking and laughing with them, denied any suicidal ideation or feelings of hopelessness AND kept telling them what the right treatment was (proving that I did not have such low self-esteem that I was afraid to speak up). 
I wish we could find a lawyer with enough guts to sue the CDC -- class action suit -- for their contribution to what's befallen us over the past 25 years.  The reimbursement for lost wages alone would cripple the Federal budget, much less when we demand payment for 25 years of "pain and suffering".

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