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.