ME/CFS Advocacy and Empowerment

***NEWS ALERT June 6, 2019 – SENATE ME/CFS FUNDING ACTION ALERT – May 24, 2019 –   SENATE PASSES ME/CFS RESOLUTION ***

Welcome to the Solve ME/CFS Initiative (SMCI) Advocacy Corner.

Here you will find current actions, local campaigns, and helpful tools to empower your story to make change. We work proudly with other organizations, stakeholders, and advocates both inside and outside of the ME/CFS community.

SMCI’s key advocacy goals include:

  1. Expand and Accelerate Research Investment for ME/CFS
  2. Expedite government response to the ME/CFS public health crisis
  3. Increase the quality and accessibility of clinical care and patient support for ME/CFS
  4. Raise awareness and improve understanding of ME/CFS

To learn more about our advocacy work, view the Solve ME/CFS Initiative Policy Advocacy Statement (PDF)

Quick Navigation

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Current Advocacy Action Items

Tell Your Senator to “SUPPORT A FUNDING INCREASE FOR ME/CFS” Today!

The U.S. Senate Appropriations Committee is currently considering our request to increase federal ME/CFS funding to $9.9m. Ask your Senator to support this request today.

Our champion, Senator Markey, led two requests with 18 other Senators from both parties. These requests, if approved, can increase funding for ME/CFS research and education!

1) Requesting $9.9 million for ME/CFS programs at the CDC (Labor-HHS committee)
2) Adding ME/CFS to the Peer-Reviewed Medical Research Program (Defense committee)
Please contact your Senators TODAY and ask them to support these efforts.

Experienced Advocates! Check out the Advocacy Action Guide to take your advocacy to the next level.

 

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SMCI’s ME/CFS Advocacy Week & Washington DC Lobby Day

Solve ME/CFS Initiative is proud to sponsor the Annual ME/CFS Advocacy Week. This monumental advocacy effort contains actions for every energy level and ability to join, from a social media post to meeting with Congressional leaders face to face in Washington DC. The goal of our efforts are to educate, empower, and deliver our message: “Take action for ME/CFS now!”

2019 ME/CFS Advocacy Week and Washington DC Lobby Day

2018 ME/CFS Advocacy Week

2017 ME/CFS Advocacy Week (joint with #MEAction)

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Previous Advocacy Action Items

May 23, 2019 – Advocacy Action: Urge your Representative and Senators to Support Improved Medicaid Coverage of Clinical Trials!

The CLINICAL TREATMENT Act, H.R. 913, was introduced by Representatives Ben Ray Lujan (D-NM-03) and Gus Bilirakis (R-FL-12) to guarantee coverage of the routine care costs of clinical trial participation for Medicaid enrollees with a life-threatening condition or disability. Improved access and coverage of clinical trial participation benefits ME/CFS patients and helps reduce the cost of clinical trials. This is vital for under-funded diseases, like ME/CFS, which struggles to secure funds for clinical trial research.

Take action here

March 18, 2019 – URGENT ACTION ALERT! Support a Funding increase for ME/CFS!

Our champions, Congressmembers Lofgren and Eshoo, are currently asking for support for TWO requests that can increase funding for ME/CFS research!

1) A letter to the Labor-HHS SubCommittee: Requesting $9.9 million for ME/CFS programs at the CDC
2) A letter to the Defense SubCommittee: Adding ME/CFS to the Peer-Reviewed Medical Research Program
Please contact your member of the House of Representatives TODAY and ask them to sign-on to these efforts.

The deadline to sign on is COB, Wednesday, March 27th.

Take action here

December 18, 2018 – Holiday Advocacy Victory: 44 Members of Congress Sign on to Support People with ME/CFS

Thanks to another strong turnout from the ME/CFS advocacy community, 44 Members of Congress joined together to sign this bipartisan letter to the U.S. Department of Health and Human Services (HHS) in support of people with ME/CFS. The bicameral letter was sponsored by Senator Ed Markey (MA) in the Senate and Congresswoman Anna Eshoo (CA-18) in the House of Representatives. The letter was drafted as an urgent response to the sudden termination of the Chronic Fatigue Syndrome Advisory Committee (CFSAC).

September 6, 2018 – Chronic Fatigue Syndrome Advisory Committee Dissolved, We Demand Congressional Action!

Without any prior notice to committee members or the public, the Department of Health and Human Services (HHS) announced that the Chronic Fatigue Syndrome Advisory Committee (CFSAC) had completed its mission. Solve ME/CFS Initiative is launching a Call to Action, demanding congress to take action and pass legislation to ensure ME/CFS is represented, funded, and that a new ME/CFS Federal Advisory Committee is created. Join us by sending your own message to congress using the template below.

May 1, 2018 – Join us now to bring ME/CFS Awareness to the US Senate!

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.

April 11, 2018 – I support Carol Head for CFSAC!

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.

March 8, 2018 – Will your Member of Congress stand for ME/CFS?

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? 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.

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.

February 12, 2018 – Tell Congress To Give ME/CFS Research a Fighting Chance!

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.

Ask your member of Congress to request ME/CFS be added as an eligible research topic area.

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Empower your Advocacy: Training Tools

View the recordings of our online trainings

Also, check out the #MEAction Congressional Advocacy Toolkit – http://www.meaction.net/wp-content/uploads/2015/05/Congressional-Toolkit.pdf

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ME/CFS Advocacy Resources

  • State and District ME/CFS Data (Google Drive)
  • Institute of Medicine Report Brief (PDF)
  • ME/CFS By the Numbers Infographic (PDF)
  • About the Solve ME/CFS Initiative Flier (PDF)
  • March 19, 2018 – ME/CFS Appropriations Request Sign-on Letter (PDF)
  • April 6, 2017 ME/CFS Appropriations Congressional Letter (PDF)
  • ME/CFS Funding Burden Graphs Comparison, prepared by Art Mirin (PDF)

 

  • Materials from ME/CFS Advocacy Week 2018
    • Faces of ME/CFS (PDF)
    • About SMCI Handout (PDF)
    • 1 page INFOGRAPHIC about ME/CFS (PDF)
    • ME/CFS Advocacy Day Reception Invitation (PDF)
    • Advocacy Week Local and Online Toolkit (PDF)
    • March 19, 2018 – ME/CFS Appropriations Request Sign-on Letter (PDF)
    • April 6, 2017 – ME/CFS Appropriations Sign-on Letter (PDF)
    • Advocacy Day Agenda & Schedule of Events (PDF)
    • Map of Capitol Hill (PDF)
    • Shuttle Map and Schedule for ME/CFS Advocacy Day (PDF)
    • ME/CFS Advocacy Day Press Kit: Click Here

 

  • Materials from ME/CFS Advocacy Week 2017
    • Social Media Guide for Congress (PDF)
    • 1 page summary sheet about ME/CFS (PDF)
    • Faces of ME/CFS Flier (PDF)

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SMCI Position Statements and Letters

 

September 10, 2019  Comments and Thanks: “A Town for People with Chronic-Fatigue Syndrome.”
September 5, 2019 – ME/CFS Disease Criteria and Terminology: Research, Inclusion and Community
July 22, 2019 – Letter of support for EU petition, Funding for ME Biomedical Research
July 8, 2019 – Public Comments, July 10th Meeting of U.S. Access Board
June 8, 2019 – Request for Further Research Regarding Current Guidelines Applicability for those Disabled by ME/CFS
May 9, 2019 – Statement by Solve ME/CFS Initiative (Solve ME) on Senate Resolution and Labor-HHS-Education Markup
February 15, 2019 – Letter of Support HR 913, Clinical Treatment Act
February 8, 2019 – Retraction and Apology request, University Times
February 8, 2019 – Retraction and Apology request, University Times
January 24, 2019 – Letter in Support of Women’s Health Research Day
November 7, 2018 – Community Letter to HHS on Termination of CFSAC
November 2, 2018 – 10 Organizations Request Legislative Solutions for ME/CFS
October 31, 2018 – Statement by Solve ME/CFS Initiative President and CEO Carol Head on the naming and definition challenges of Myalgic Encephalomyelitis (ME) 
October 16, 2018 – Thank you letter for $2b increase to NIH funding FY19
September 14, 2018 – Fiscal Year 2019 Appropriations Funding Package StatementNovember 2, 2018 – 10 Organizations Request Legislative Solutions for ME/CFS
September 14, 2018 – Fiscal Year 2019 Appropriations Funding Package Statement