Solve ME/CFS Initiative and #MEAction lead 10 organizations in request for ME/CFS legislation

[Kalliope]

Ten organisations ask congress to create legislation for ME/CFS

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.

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#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.

 

[MeSci]

Merged thread

Source: Solve ME/CFS Initiative

Date: November 2, 2018

URL:
https://solvecfs.org/wp-content/uploads/2018/11/CSFAC-Community-Org-Response-Signed-final.pdf

The Honorable Anna Eshoo
241 Cannon Building
Washington, DC 20515

The Honorable Zoe Lofgren
1401 Longworth House Office Building
Washington, DC 20515

The Honorable Jim McGovern
438 Cannon House Office Building
Washington, DC 20515

The Honorable Jamie Raskin
431 Cannon House Office Building
Washington, DC 20515

Dear Representatives Eshoo, Lofgren, McGovern, and Raskin:

We, the undersigned ME/CFS advocacy and research organizations, request that the House of Representatives pass legislation that would (1) create a federal advisory committee, interagency coordinating committee, or federal working group for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) 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.

Rest at link

 

[MeSci]

Merged Thread

Source: Solve ME/CFS Initiative
Date: November 10, 2018
URL: http://go.solvecfs.org/webmail/

Solve ME/CFS Initiative and #MEAction lead 10 organizations in request for ME/CFS legislation
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Solve ME/CFS Initiative, #MEAction, 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 following the sudden dissolution of the Chronic Fatigue Syndrome Advisory Committee (CSFAC) in September. (Read more here.) We also requested that Congress address other key needs of the ME/CFS community.

Specifically, we 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.

The letter we sent specified what we believe an effective CSFAC replacement would look like. Additionally, 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 focus 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.

* For the Centers for Disease Control, we request national epidemiological research using appropriate patient selection and epidemiological methods. Such studies would 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.