Take Action! Demand Congress Create a Federal ME/CFS Advisory Committee.
ME/CFS must be represented!
On September 6, the Secretary of Health and Human Services disbanded the federal Chronic Fatigue Syndrome Advisory Committee (CFSAC) by allowing the charter for the committee to expire after 16 years.
The Chronic Fatigue Syndrome Advisory Committee was the only voice exclusively for the ME/CFS community in the federal government. We cannot allow the administration to silence people with ME/CFS, their loved ones, scientists, and advocates.
Join Solve ME/CFS Initiative in calling on congress to establish a new ME/CFS Federal Advisory Committee –
through congressional action
– to ensure that our community will be heard!
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I was surprised and alarmed to hear that the Secretary of Health and Human Services announced on September 6 - without any prior notice to committee members or members of the public - that charter for the federal advisory committee for Chronic Fatigue Syndrome was allowed to expire on September 5. It is urgent that Congress pass a statute to create a new federal advisory committee for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). While the Chronic Fatigue Syndrome Advisory Committee (CFSAC) is a discretionary entity, the committee’s work is of great value and importance as the only designated voice for up to 2.5 million Americans with this terrible disease. Out of the all of the discretionary committees under HHS, it is my understanding that this is the ONLY committee that HHS has chosen to eliminate. In the September 6 statement announcing the committee’s termination, HHS stated that “The committee and ex-officio members have ably fulfilled the duties in the charter,” yet the majority of the committee's recommendations to HHS remain pending. Moreover, • 84 – 91% of people with ME/CFS remain undiagnosed or misdiagnosed • NIH research funding for FY18 is actually expected to DECREASE by 17.6% • There are still fewer than 12 expert ME/CFS clinical care practices serving an estimated 2.5 million American patients • ME/CFS costs the US economy between $17-$24 billion each year The CDC has called this disease “America’s Hidden Health Crisis” and the work of the federal government to address this crisis is not yet done. HHS needs the input of patients, experts, and doctors through a Federal Advisory Committee to guide and shape good policy to address this critical public health issue. I ask you to work with ME/CFS organizations, experts, and community representatives to create and pass legislation creating a new federal ME/CFS advisory committee and programs. It is unacceptable that the federal government abandon this vital work for millions who are suffering. Sincerely,
Your Elected Officials