The following is my draft attempt at a petition that, I hope, could be sent around to patients, advocates, and organizations for many different diseases to create a broad and powerful voice.
My goal was to make it emphasize the common tactics of abuse suffered by many of these communities. I think this might be something everyone will be able to understand and to unite and rally around (even if particular abuses don't apply to particular communities).
The concrete focus in the end is toward the IOM contracts for GWI and ME/CFS and how they need to be dismantled. Even though the most actionable demand is to dismantle the ME/CFS contract, I tried to make the petition as general as possible since any appeal to such a broad group will probably be less effective if we only make demands for ourselves.
My hope is that this or something like it could be made into an actual petition and posted around on various forums, in combination with relevant disease-specific introductions/explanations of the situation and petition.
Let me know what you think and if any changes should be made.
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To whom it may concern:
We are the sufferers, supporters, friends, and family of the many millions throughout America and many more throughout the world whose lives have been devastated by various “medically unexplained” diseases. These diseases include MS, Parkinson’s, Alzheimer’s, Autism, GWI, Lyme, ME/CFS, Fibromyalgia, Lupus, Crohn’s, psychiatric diseases such as Schizophrenia and Bipolar Disorder, and many others.
We are not united by particular commonalities in the pathologies and etiologies of our diseases (though certainly such commonalities are known to exist and others will undoubtedly be discovered).
We are instead united by the much stronger bond of commonly suffered abuse, negligence, malfeasance, and perhaps even fraud, at the hands of the very government agencies responsible for helping us. This includes the CDC, NIH, IOM, VA, and many other agencies under the HHS umbrella. It includes the office of the President himself, under whose auspices many of these events have unfolded and continue to unfold with implicit authorization.
We have witnessed common patterns of tactics employed by these agencies against sufferers of these diseases in order to marginalize and discredit them. These tactics include:
- The creation and promotion of overly broad, symptom-based disease definitions, in spite of objections from knowledgeable patients and expert clinicians and researchers. These definitions necessarily muddy research results by obscuring and watering down cohorts.
- The fixing of politically desired research outcomes by selectively funding researchers with ideologically-aligned perspectives, generally those promoting psychosomatic and psychosocial theories and the concomitant behavior-driven interventions and coping mechanisms.
- The persistent refusal to acknowledge and build upon large bodies of peer-reviewed, replicated research that show stark biological abnormalities underpinning these diseases. These bodies of research exist largely due to private and patient funding thanks to the biases in federal funding.
- The use of disingenuous and deceptive research methods and methodological alterations by health agencies to give the outward appearance of “good faith” biological investigation while actually ensuring outcomes in alignment with desired policy. One recent example is the CDC’s specious reasoning for conducting research on ME/CFS patients using only 1 day CPET testing instead of 2 day repeat CPET when the existing literature makes it abundantly clear that 2 day testing is necessary to show the abnormalities specific to the disease.
- The misappropriation of Congressionally mandated funds.
- The circumventing and ignoring of community-supported recommendations by Congressionally sanctioned advisory committees.
- The stonewalling of calls for transparency and the obfuscation of legitimate FOIA requests.
- The implicit fostering of disease illegitimacy in the public perception by the adoption and hyping of selective research and biased “expert consensus” that undermines the biological severity of the diseases and promotes an implicit blaming of the sufferers for their plight.
- The funding and bolstering of false patient advocacy organizations that misrepresent the views of their purported communities (patients, clinicians, and researchers) in order to create an illusory appearance of broad community support for government actions and positions that are actually opposed by these communities.
We have, in recent years, witnessed the unprecedented use of the IOM to create a new disease definition for GWI, rebranding it as Chronic Multi-symptom Illness (CMI) and recommending only behavioral and psychiatric interventions. This committee was formed in defiance of recommendations made by the Congressionally sanctioned GWI Advisory Committee and in spite of widespread opposition amongst the GWI community. The IOM committee was comprised of mostly non-experts, and the few GWI experts included were firmly entrenched in the psychosomatic camp. The committee was only permitted to consult with a subset of the published literature, a subset strongly biased toward psychosomatics, in order to derive their findings. It was a virtuoso performance of bureaucratic steamrolling.
We now observe that ME/CFS is next on the proverbial chopping block, having received an eerily similar IOM contract to create a new disease definition. Once again, this was done in defiance of the Congressionally sanctioned CFS Advisory Committee recommendations. The contract faces widespread patient opposition. In another unprecedented step, 35 of the most distinguished ME/CFS clinicians have penned an open letter to Secretary Sebelius, urging the cancellation of the IOM contract and the immediate adoption of an existing disease criteria (Canadian Consensus Criteria (CCC)) that is widely supported by patients, clinicians, and researchers alike.
We have had enough! We refuse to permit the HHS to proceed with its plan to bury our diseases one by one in permanent wastebaskets designed to ensure a halt to the already negligible scientific progress.
We demand that the HHS immediately take the following actions:
- Rescind the reports and recommendations of the IOM committee on GWI and undo the reclassification of GWI as CMI.
- Cancel the IOM contract for ME/CFS and take up without reservation the recommendation of the ME/CFS clinicians to officially adopt the CCC as a starting point.
- Formally renounce any future use of IOM contracts to redefine and/or reclassify other diseases.
- Formally acknowledge that the federal government and its health agencies have failed sufferers of these diseases by deliberately promoting psychosomatic and “medically unexplained” characterizations and by steadfastly ignoring and downplaying existing and growing evidence of biological pathologies.
We suggest you take these demands very seriously. We will no longer accept empty platitudes and meaningless bureaucratic shuffling. We will no longer stand by and watch each other fall one at a time. We are united for justice and scientific progress for all of us. Our numbers are larger than you can imagine and continuously growing, a fact that is all but ensured by the policies enacted by the US health agencies to stifle progress. And though we are quite ill (many unable to leave their houses or beds), we possess an unbreakable resolution that is forged not only in the bitter fires of devastating illness, but also in the unrelenting inferno of systemic abuse at your hands.