Ember
Senior Member
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Our perspective on the federal government and why we continue our work
More...Importantly, the CFIDS Association serves as a non-voting liaison committee representative on the CFS Advisory Committee and works to build appropriate relationships with HHS, CDC, FDA, and the NIH to ensure that ME/CFS is high on federal agency radar. This illness is facing issues of significant under-funding and we want that problem to be addressed. While the federal government historically has a perceived lack of urgency in issues related to ME/CFS, we have seen specific evidence that ME/CFS is on the federal radar:
All of this tangible, specific activity – including the appointment of the IOM committee to develop clinical diagnostic criteria – indicates an important opportunity to build an emboldened base of federal support, opening the door to validation, funding and research.
- In early 2013, ME/CFS was the first disease focused on in a series of FDA-sponsored drug development workshops and it resulted in the “Voice of the Patient” report, lauded by many. In this report, FDA has determined, in writing, that Chronic Fatigue Syndrome and Myalgic Encephalomyelitis (ME/CFS) are serious conditions for which there are no approved drug treatments. It further stated, ““FDA recognizes that patients have a very unique ability to contribute to our understanding of this broader context of the disease, which is important to our role, and that of others, in the drug development process. We share the patient community’s commitment to facilitate the development of safe and effective drug therapies for this disease.”
- CDC is conducting a study at multiple, expert ME/CFS clinical sites to better understand diagnostic and patient outcomes.
- CDC recently used evidenced-based literature, focus group data, patient case studies, and health behavior theories to develop new CFS educational curricula aimed at medical students. Dissemination of the educational curriculum is occurring using MedEd Portal, and CDC is submitting materials to MedEd Portal for peer-review publication.
- NIH is conducting an Evidence Based Methodology Workshop for ME/CFS to evaluate and improve research criteria.
- CFS is one of few diseases that have a dedicated advisory committee (the CFSAC) providing advice to the executive branch. The majority of the committees advise on very broad topics; the specificity of the CFSAC gives our ME/CFS community “access and influence” on issues important to us.
- HHS is following the recommendations of the CFSAC to reach a consensus on case definition and has charged the IOM with developing an evidence-based report on ME/CFS diagnostic criteria....