There's More to the CDC's Conclusions About CFS Than Meets the Eye
By Craig Maupin -  [log in to unmask]



        In certain circumstances, silence can be refreshing.   In other
circumstances, silence can be uncomfortable.   At a recent press conference
on April 20th, 2006, Centers for Disease Control (CDC) researchers laid out
their plans for the future of chronic fatigue syndrome (CFS) research and
clinical care.    For several days following the press conference, the CFS
community was remarkably silent -- uncomfortably silent.

        The press conference generated the most publicity CFS has seen in
the last 20 years, as major networks and over 400 newspapers carried the
story.   The CDC claimed their researchers had uncovered "groundbreaking
results" which prove CFS has a "biological basis" as a cumulative,
post-stress disorder.    CDC researchers also affirmed that some CFS
sufferers are "as impaired as a whole as people with MS, as people with
AIDS, as people undergoing chemotherapy for cancer".   According to Dr.
William Reeves, who directs the CFS program, the CDC will soon fund a
provider education program designed so "providers, medical schools, and
insurance providers get this more into their mainstream."

        CFS advocacy groups have long complained that the federal government
has not funded enough research, created enough media attention, or
discovered effective treatments.    But if the CDC's press conference
fulfilled these requests, why weren't CFS sufferers breaking out in a
collective celebration?    Why weren't most advocates cheering the positive
culmination of years of political requests for "more"?

        Thursday, April 20th marks an attempt to shift they way chronic
fatigue syndrome will be conceptualized - by scientists, physicians, and the
public.    The Centers for Disease Control is esteemed to be medicine's
"Seal of Approval".     More importantly, Dr. William Reeve's cards, which
have been painstakingly held close to his chest over the years, are finally
on the table.   On Thursday, Reeves and his allies appeared to be playing
those cards in an attempt to sway public opinion and policy.

        Despite the spin about "biology", the three genes which Dr. William
Reeves claims will direct future research and clinical care for CFS are
primary to the biological footprint of post-traumatic stress disorder and
anxiety.    Reeves claims a recent study's outcome has alerted the Centers
for Disease Control to the importance of stress response in the
pathophysiology of CFS.    In the study, abnormal expression of genes
involving stress were uncovered in a broad array of research samples which
included people with fatigue, CFS, and other unexplained conditions.    And
now, CDC researchers insist the study will change the way CFS is handled
clinically by physicians, scientists, and insurers - very soon.

        The CDC is well-positioned to enact this shift.    At the moment,
they possess a strong facade of flawed, yet "empirical", evidence.    Reeves
has also worked diligently to build strong financial and philosophical ties
to advocacy leaders who are eager to assist his efforts.    But more
importantly, the CDC team is well-versed in the technical, yet gentle,
terminology that can help move their ideas forward politically and socially.
Terms like "biologically-based", "genetic predisposition", "homeostatic
imbalance", "glucocorticoid receptors", and "allopathic load' assuage many
CFS sufferers to a new post-traumatic stress disorder.    Reeves made use of
that knowledge on Thursday.

        What didn't find its way into newsprint about the CDC's announcement
was the collective concern of CFS community.   Most CFS sufferers viewed the
announcement as a hallmark event in a long list of disappointments.   They
know they face complex set of problems.    And currently, they realize that
is little or no organized advocacy efforts in the U.S. addressing these
issues.   What are the problems?

        First, the CDC's Wichita CFS research subjects don't appear to be
very disabled.    At the press conference, Reeves touted the fact that 84
percent of the Wichita samples his staff had evaluated to have CFS didn't
even know they had any illness, much less chronic fatigue syndrome.    And
according to a CDC study published in 2003, the average combined workload
(employment and chores) of those diagnosed with CFS by the CDC's research
definition was close to 48 hours per week.    Apparently, these Wichita CFS
sufferers, diagnosed by using the CDC's 1994 research definition, are
running circles around many healthy people.

        In 1994, the CDC merged fatiguing conditions such as anxiety, sleep
disorders, and fibromyalgia into the CFS research rubric, an approach which
was favored by those who hastily espoused a psychiatric model for CFS.
But questions remain as to whether this "integrative approach" is muddying,
rather than clarifying, research results?     Many CFS advocates feel the
freewheeling approach has simply has made their illness vanish.     To them,
the CDC is now left finding common markers for a wide variety of fatiguing
disorders - an understandable outcome for an illness is named after a common
human experience of "fatigue".    The construct of CFS no longer serves who
it was meant to serve.

        Secondly, CFS sufferers are deeply concerned about the objectivity
of the government agencies charged with researching CFS.    As early as
1995, Reeves claimed that the distinguishing feature of CFS was "multiple
major lifetime stresses in the year before one becomes ill."    Since his
1995 comment, Reeves surrounded himself with researchers who seemed to share
his early viewpoint.     At the 2004 Oct 8-14 AACFS conference, Dr. James
Jones (widely considered Reeves right-hand man) postulated the idea that the
CDC believed CFS may be a severe form of post-traumatic stress and
fear/avoidance.   Reeves most visible collaborations for years have been a
group of researchers who specialize in post-stress disorders at the Emory
University Department of Psychiatry and Behavioral Sciences (Raison, Heim,
Miller).    And now, Reeves has since been named an adjunct professor of
psychiatry at Emory University.   Because this is a position for which
Reeves has very few qualifications, his acceptance of such an offer may
speak more about both his character (and his views toward CFS) than his
battle to return funds to the CFS program in the late 1990s.

        However, the most disheartening aspect of the Reeve's recent
announcement was simply his decision to make the announcement at this time.
Why declare that stress and post-trauma response will be the primary
emphasis of future clinical care and research for CFS?    Reeves clearly
stated that policy would be based on a recent study designed so ONLY genetic
snips pertaining to the HPA axis (which pertains to the biology of emotions
and stress response) would receive consideration.     Wouldn't it be more
responsible, from a scientific and social perspective, to wait until a study
was completed which could be designed to test the entire genome?    Sadly,
this question doesn't have a good answer.     Even worse, it isn't being
asked by those who should be asking it.

        Admittedly, a small group of CFS advocates have hailed the CDC's
push to shift CFS research and clinical care in a new -- more narrow --
direction.   CFIDS Association of America director Kimberly McCleary said
the findings contribute to an evolving, yet complicated, explanation of how
genes, stress and other factors work together to cause and perpetuate the
illness.     Dr. Lucinda Bateman, a CAA board member, added, "This is a very
important foundation for developing new treatments".

        I would love to share their optimism.   Yet, are these comments the
voice of the CAA's contracts with the CDC, or are they the voice of those
who suffer from CFS?     As I perused a recent "Research Edition" from the
CFIDS Association of America (CAA) this spring, I couldn't help but be
saddened by the beliefs about CFS which were evident therein.    If you
profess to be a strong and principled CFS advocate, yet you decide to
portray CFS as a sleep disorder, "genetic predisposition to "misperceive"
symptoms, or post-stress response, are you effective?    Unfortunately,
those who have supported this approach, financially and otherwise, have done
more harm to CFS sufferers than good.    A strong salary, a regional
clinical center, or a deep bank account are not the most valuable assets any
advocacy organization possess.   Because CFS is an illness which has been at
the center of an ideological and political tug-of-war, it is the "how well"
that matters most, not the "more".

        I started the CFIDS Report several years ago because I wanted to
create a haven from the controversy, anger, and divisiveness that often
surrounds CFS.   Yet, to place a positive spin on the developments of April
20th, 2006 would be insincere.    Research, clinical care, and advocacy
efforts for those with CFS will be adversely affected.    And when a
reliable, professional, and diplomatic voice was needed to articulate why
CFS could be conceptualized outside Reeve's paradigm, the CFS community did
not have a leader who could act in that capacity.

        I know those who will be negatively affected by recent events.
They are my friends.    They are my fellow community. Unlike the CFS samples
in the CDC's Wichita dataset, they are unable work 48 hours a week.    On
Thursday, April 20th, they reacted to the CDC's news about CFS with silence.
But perhaps it was this silence, inaction, and a collective inability to
address mounting problems that was the most disheartening news of all.






     Maes, M.   Serotonergic and Noradrenergic Markers of Post-Traumatic
Stress Disorder with and without Major Depression.   Neuropsychopharmacology
(1999) 20 188-197.

  Solomon, Laura, Papanicolaou, D; and Reeves, W.   Functional Status of
Persons With Chronic Fatigue Syndrome in the Wichita, Kansas Population.
Biomed Central, Health and Quality of Life Outcomes, Oct, 2003.   (approx 31
hours work per week, plus 17 chores)

   Reeves, William; Testimony, Presidential Committee on Gulf War Illnesses;
Green Room, San Francisco War Memorial Building; Nov 7, 1995    Wisconsin
CFS Association.  Good Enough to Take it To the Bedside.

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