Monday, April 20, 2009

Craig Maupin's CDC letter

As indicated in a prior post, CDC wants our input.  If you're not sure what to write, here's a sample letter from Craig Maupin of CFS Report.
To Whom it May Concern:

    My name is Craig Maupin.   For several years, I have run a popular
website on chronic fatigue syndrome (CFS), The CFS Report
( ) .  Like many people with CFS, I want to see the
CDC's research program succeed.  

          However, the CDC's CFS Research Program has failed to garner my
support.    And given that I interact with CFS sufferers on a regular basis,
I can say with confidence that the CDC's efforts does not have the support
of the CFS community.    Though the CFS community is diverse, currently I
know of no CFS sufferers who feel that the leadership of the CFS program is
effective or capable.

    Investment decisions at the CDC program have been narrow and
restrictive.   Some of those decisions are as follows:

1.   In 2006, the CDC research program held a news conference that touted
"groundbreaking findings" regarding the pathology of CFS.   Such an
announcement from the Centers for Disease Control will steer the direction
of future research and clinical care.   How is it responsible
decision-making to base such an announcement on a "pathology-specific" study
that discarded any findings outside of the HPA axis?   

2.   Since 2002, the majority of the CDC's funds have gone to two
contractors.   One is ABT Associates, and the other contractor is a small
group of researchers at the Emory University Department of Psychiatry.  The
question is whether the current CFS program is pursuing a personal interest
in stress and anxiety, rather than the broader interest in CFS shown by the
scientific community.  The budgeting of resources with these two contractors
does not correlate well with the following:

a.  A lack of any appreciable progress from the investments in ABT

b.  Researchers with a diverse set of interests have been privately funded.
These researchers are seen in the efforts of the Whittemore Institute and
the CFS Research Foundation.  More diversity in CFS research was seen at a
recent HHV-6 Foundation conference and the IACFS/ME Conference in Reno.
These conferences are evidence that there is strong interest in CFS beyond
the HPA axis, stress, and anxiety.

c.    In 1998, Dr. William Reeves (Congressional hearing on the Gulf War)
stated that CFS was attributable to "multiple major lifetime stresses in the
year before one becomes ill."   Dr. Reeve's views toward CFS were
established publicly before he chose to invest heavily in the psychiatry
department at Emory.
d.    There are no women represented in the leadership of the CDC's CFS
Research Program.   As stated earlier, decisions have been made to restrict
much of the research investments for CFS research at the CDC to stress,
anxiety, and the HPA axis.  These restrictions are often associated with
societal biases toward women's illnesses.   Has the CDC done enough to
assure the public that the questionable decisions cited above are based on
science, and not traditional societal or gender attitudes toward women's
reactions to stress or anxiety, especially given the lack of female
leadership within the program?

3.    Emory University's recently publicized problems with conflict of
interests at the psychiatry department have done nothing to shore up
confidence in the CFS research program.   The congressional probes into
conflicts of interest are causing questions in the CFS community to fester,
questions such as whether or not there was compensation to Dr. Reeves for
teaching classes in stress response and fatigue at Emory.   Though Emory has
decided not to address those questions, I believe that Dr. Reeves would not
take salary from his own contractor.  However, clearing up the speculation
would be helpful.

4.    The largest contributor to the lack of confidence in the CDC's CFS
Research program comes from its highly controversial research definition.
The average research subject of the Wichita dataset was capable of 31 hours
or work and 17 hours of chores and activities a week.   This level of
activity does not represent me or my clinical symptoms.  It also does not
reflect an accurate clinical picture of CFS patients.  In addition, a recent
study found that the current "empirical definition" captures subjects with
emotional disorders. 
       Whether this clinical picture is accurate or not, it will greatly
impact the advice that my caregivers receive from the CDC as to how to treat
and manage my illness.  The truth is that most CFS sufferers and many
doctors no longer believe that the CDC program is researching their illness.

      For fifteen years, Dr. William Reeves has shown a commendable interest
in stress disorders.  He has worked diligently with the military on studies
on these disorders - working with the Air Force in 1998 and with the Army at
Fort Benning in 2006.   However, despite Dr. Reeve's deep passion for
learning more about post-traumatic stress, he does not have the confidence
of the CFS community. 
      The CDC's CFS program needs to recapture the CFS community's support.
To do this, the CDC's needs to address the concerns raised above.   And to
address those concerns, they will need to change the leadership at the CDC's
CFS research program.  One through a change in leadership will the program
begin to more accurately reflect the breadth of current CFS research. 

                  Craig Maupin

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