Take Action! Demand Congress Create a Federal ME/CFS Advisory Committee. (All States)

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!




**Please note - due to the requirements of the Congressional messaging system - the "Prefix" item must be selected in order to send your message to your members of congress**
 

Join us now to bring ME/CFS Awareness to the US Senate! (All States)

Senator Ed Markey of Massachusetts has agreed to lead a Senate Resolution for ME/CFS. The resolution is intended to raise awareness and voice the position of the Senate regarding ME/CFS. Specifically, it highlights the prevalence and effects of ME/CFS, encourages the NIH and other federal agencies to support research, and calls upon the medical community to improve medical education and training efforts.

You can use the form below to send a message to your Senators, asking them to join Senator Markey in this historic effort.


Note: Due to the requirements of the Congressional messaging systems, the "Prefix" item must be completed in order to submit. The "Send My Message" button will appear below the pictures of your elected officials after the form has been fully completed and the "Show Me My Officials" button clicked.

I support Carol Head for CFSAC! (All States)

Last month, the Department of Health and Human Services announced it was accepting nominations for vacancies on the Chronic Fatigue Syndrome Advisory Committee (CFSAC). CFSAC provides advice and recommendations to the Secretary of HHS, through the Assistant Secretary for Health (ASH), on a broad range of issues and topics related to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

We think our president, Carol Head, will be a strong and fearless voice for people with ME/CFS as a voting member of this federal advisory committee. Join SMCI's friends and ME/CFS leaders from around the country in this letter supporting Carol’s nomination.
 

Will your Member of Congress stand for ME/CFS? (All States)

Led by Congresswomen Ana Eshoo and Zoe Lofgren, members of congress are coming together in a single voice to stand for ME/CFS. Will your representative join them?

Use the form below to send a message to your member of congress and ask them to join the letter to the US House of Representatives Appropriations Committee for ME/CFS funding and research.

*Deadline is March 14th!*

Read the full letter and committee report language here.  In brief, the proposed report language:

(1) Supports continuation of the $5.4 million ME/CFS funding for the Centers for Disease Control’s (CDC),

(2) Encourages CDC to resolve ME/CFS case definition issues and expand its efforts to educate health care providers,

(3) Recommends that NIH create a strategic plan for ME/CFS research and increase the amount and types of funding,

(4) Urges the Department of Health and Human Services to devise a multi-year strategic plan. The sign-on letter states that the increases in NIH’s budget affords NIH the opportunity and ability to increase funding to better reflect the ME/CFS disease burden.

This action is a joint effort between #MEAction and the Solve ME/CFS Initiative.



Note: Due to the requirements of the Congressional messaging systems, the "Prefix" item must be completed in order to submit. The "Send My Message" button will appear below the pictures of your elected officials after the form has been fully completed and the "Show Me My Officials" button clicked.

Tell Congress To Give ME/CFS Research a Fighting Chance! (All States)

Did you know that Congress oversees a $11.9 billion medical research budget independent from the NIH?

It's called the Congressionally Directed Medical Research Programs (CDMRP) and right now ME/CFS is not an eligible research topic area. But we can change that and open up a whole new area of research funding for ME/CFS.
 
Please use this form and ask your member of Congress to request ME/CFS be added as an eligible research topic area.

Note: Due to the requirements of the Congressional messaging systems, the "Prefix" item must be completed in order to submit. The "Send My Message" button will appear below the pictures of your elected officials after the form has been fully completed and the "Show Me My Officials" button clicked.

Ask your member of congress to "experience" Unrest (All States)

We are pleased to announce that Solve ME/CFS Initiative (SMCI) has joined forces with the Time for Unrest impact campaign for the ground-breaking documentary film, Unrest, directed by and featuring Jennifer Brea. SMCI is now an official partner of Time for Unrest, a global impact campaign to change the way the world sees, supports, treats, understands, and funds research for M.E.

Together with the Time for Unrest campaign and #MEAction, we are bringing the virtual reality (VR) experience of the Sundance award winning film to Capitol Hill.

Ask your member of congress to attend this unique educational opportunity and see through the eyes of person with M.E.

Help Nevada Lead on ME/CFS! (NV)

The Solve ME/CFS Initiative is teaming up with Courtney and Bob Miller and people with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) across Nevada. Congressman Mark Amodei is leading the whole Nevada delegation in Congress to sign a letter to National Institute of Health (NIH) Director, Dr. Francis Collins, urging more funding for research on ME/CFS.

Ask your Nevada member of Congress to stand with Congressman Amodei and support people with ME/CFS.

Tell Congress "Don't defund ME/CFS!" (All States)

Last week, the House Appropriations Subcommittee on Labor-HHS zeroed out the $5.4 million line item for Chronic Fatigue Syndrome at the CDC....again.

Tell your members of congress to restore the funding for ME/CFS for next year’s budget. We cannot abandon the progress we've made so far!
 

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