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.
Darren Randon, a poet, qualified teacher, community builder, facilitator, host and co-founder of Well Versed Ink from Thornton Heath, is launching a new group aimed at supporting Black and Black-mixed people with ME and/or long Covid in the UK. The group plans to create a safe space to share experiences and create community with the