Congress to HHS: What's replacing CFSAC? (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. Senator Markey is leading a bicameral (U.S. House and U.S. Senate) letter to the Department of Health and Human Services (HHS).

Use this form to contact your Senators and Member of Congress IMMEDIATELY and urge them to sign this letter to the Department of Health and Human Services (HHS). The letter (1) states that more must be done by HHS to address ME/CFS needs, (2) requests HHS to explain how it will fill the gap left by the September, 2018, dissolution of the Chronic Fatigue Syndrome Advisory Committee (CFSAC), and (3) poses detailed questions regarding the ME/CFS activities and plans of the National Institutes of Health and Centers for Disease Control. 

This is a joint action of Solve ME/CFS Initiative (SMCI), #MEAction, and the Massachusetts ME/CFS & FM Association

**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**
 

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.

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.

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!
 

Solve Demo Tag (All States)

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