The
recent audit of costs charged to the Chronic Fatigue Syndrome program at the
Centers for Disease Control, conducted by the Department of Health And Human
Services, revealed an ongoing diversion of Congressionally appropriated funds
meant for the study of Chronic Fatigue Syndrome to other unrelated diseases. In
light of these findings we are making the following demands.
1) A broader
investigation be undertaken by the GAO to include the use of funds appropriated
for CFS since the inception of the CDC's program devoted to the study of this
illness to the present date.
2) We believe that this misappropriation of
funds did not arise in a vacuum. We accuse the CDC of being in bad faith
historically with both Congress and people with CFS and Fibromyalgia and want an
impartial, knowledgeable panel to investigate how this bias might have affected
the design and scope of epidemiological studies and the evolution of the case
definitions which were developed under CDC auspices.
3) We believe the
same bad faith to be present at the National Institutes of Health and National
Institutes of Allergy And Infectious Disease. The most cursory reading of the
NIH schedule of grants reveals meager funding of Fibromyalgia research, and a
distinct bias towards conducting research that emphasizes a psychiatric etiology
of CFS. The NIH supports only a token amount of research that contradicts this
position, even though there is an abundance of research conducted both here and
abroad supporting biological causation of CFS. Therefore we ask the GAO to
determine if the NIH has deliberately slanted its research commitments to
confirm its prejudice and as a result has delayed and even thwarted inquiry into
biological markers and, more importantly, treatment of these terrible
diseases.
As a corollary to this, we have knowledge of intimidation,
undermining and interference with the research and publication of theories and
data that argue for an organic etiology and interpretation of our illness. We
want a thorough investigation of this aspect as well.
4) We assert that
the NIH and CDC have failed in their mission to identify the pathophysiology of
the illnesses, identify diagnostic markers, undertake surveillance projects and
educate health care providers effectively in diagnosing and treating CFS and
FMS. They have abused the discretionary latitude afforded them and have
subverted the intentions of Congress. We ask that a committee of impartial
scientists be formed to identify significant extramural research and the monies
misappropriated by the CDC, and any other agency guilty of similar practice, be
awarded to those projects.
5) Finally, we demand that individuals
responsible for encouraging and implementing these breaches of faith be severely
punished. We demand accountability for the great harm and suffering engendered
by this malfeasance.
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