Ten Organizations Ask Congress to Create Legislation for ME/CFS

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On Friday, November 2nd, #MEAction, the Solve ME/CFS Initiative, and eight other ME/CFS organizations sent a letter to our champions in the House of Representatives – Representatives Eshoo (CA18),  Lofgren (CA19), McGovern (MA02), and Raskin
(MD08) –  requesting that they create legislation for myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). To our knowledge, this is the first time a coalition of this size and breadth has come together to  address the needs of this severely ill and severely underserved disease community to the House of Representatives.
In the letter, we explained why legislation is urgently needed to fill the void left by the Department of Health and Human Services’ (HHS) dissolution of the Chronic Fatigue Syndrome Advisory Committee (CFSAC), and to address other key needs of the ME/CFS community. We also requested that the House of Representatives pass legislation that would (1) create a federal advisory committee, interagency coordinating committee, or federal working group for ME/CFS to fill the gap left by CSFAC and (2) address critical issues preventing proper diagnosis, treatment, and care for the approximately 1 to 2.5 million Americans afflicted with this horrific disease.
CSFAC was abruptly terminated in September even though there were many vital ongoing projects. While the community had been frustrated in the past by HHS failure to address the vast majority of CFSAC recommendations, CFSAC and HHS were finally beginning to produce real results and achieve collaborative success. Additionally, CFSAC represented a unique place where multiple government departments and agencies,  clinicians and researchers, patients, caregivers, and advocates could discuss needs, share information, establish priorities, and coordinate actions. Indeed, it was the only federal entity solely focused on ME/CFS. CFSAC was also an important platform facilitating ME/CFS community engagement with government agencies.
Given the manner in which HHS terminated CFSAC, we have requested that Congress create by statute an Interagency Federal Advisory Committee, Coordinating Committee, or Working Group to replace and improve CSFAC. We have also made specific legislative requests focusing on key areas of need for people with ME/CFS. We proposed numerous mandates for the various agencies in the Department of Health and Human Services (HHS) including these highlights:  
For the National Institutes of Health (NIH), we focused on allocating sufficient ME/CFS funding to broaden and accelerate NIH activities to expedite the delivery of diagnostic tools and treatments, creating a multi-year research plan, and authorizing a ME/CFS program.
The Centers for Disease Control request included national epidemiological research using appropriate patient selection and epidemiological methods. Such studies will improve understanding of prevalence, risk factors, natural history, and prognosis to inform better public health policies.
We also asked that Congress require HHS to create and fund no fewer than 12 Centers of Excellence to support research and care for those afflicted with ME/CFS.
#MEAction and the Solve ME/CFS Initiative are very excited that Massachusetts ME/CFS & FM Association, Speak Up About ME, Pandora.org, Open Medicine Foundation, New Jersey ME/CFS Foundation, Simmaron Research, Immune Dysfunction and the American ME and CFS Society joined us in this community effort. We look forward to working with them and our House champions to flesh out and refine our proposals.

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7 thoughts on “Ten Organizations Ask Congress to Create Legislation for ME/CFS”

  1. Horrah!!! Let us hear how these folks respond. Big step forward. Thanks so much for organizing this action!!
    Bobbi A.

  2. This Horrendously Hideous Diseae, steals Life itself. With Undescrbeable and Constant Pain. It takes over the Immunity and Neurological Systems of the body. ME/CFS. Humiliates, Debilitates, and Isolates; to the point, that some of us, Take Our Own Life. In an effort, to Escape ME/CFS’ grip.

  3. Thank you all for your efforts!
    And thank you #MEAction for keeping us up to date on what is happening with the “alphabet agencies.”
    Looking back at articles I’ve read, and petitions signed, I get lost in a maze of what is the current status of past actions and efforts. Reading this article, I realize I need only look at the latest news from #MEAction.
    In reply to Renea above, I hear you and appreciate your speaking out about this important subject. It is important that we help ‘powers that be’ understand the significance of this struggle BEFORE more lives are lost (through either suicide or the struggle to live without the things that ME stole from us).

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