Welcome to the Solve M.E.
Advocacy Corner


ME/CFS Advocacy and Empowerment

Welcome to the Solve ME/CFS Initiative (Solve M.E.) 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.

Solve M.E.’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)


Current Advocacy Action Items

Learn more about our 2021 Advocacy Week events here, and use our Remote Action Kit to continue to make your voice heard after Advocacy Week.

The Action Kit makes it easy to:
  • Send an email to your representatives and senators
  • Tweet directly at your member of Congress
  • Share our custom Advocacy Day graphics on social media
  • Use our customized GIPHY stickers
  • Put pressure on Congress to pass the COVID-19 Longhaulers Act

Check it out at https://actionkit21.com/.


Solve M.E.’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!”

2021 ME/CFS and Long COVID Advocacy Week Online Lobby Day

2020 ME/CFS Advocacy Week and Online Lobby Day

2019 ME/CFS Advocacy Week and Washington DC Lobby Day

2018 ME/CFS Advocacy Week

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


Previous Advocacy Action Items

Ask your Representative to Co-sponsor H.R. 7057!

Solve M.E. is proud to endorse H.R. 7057, The Understanding COVID-19 Subsets and ME/CFS Act, to authorize a $60m program expansion for ME/CFS research at the National Institutes of Health (NIH) and expand public and medical education ME/CFS initiatives.

When passed, this legislation will bolster ME/CFS research at the National Institutes of Health (NIH) by including an additional $60 million for existing ME/CFS research projects and expanding into connections between ME/CFS and COVID-19 survivors. It will also enable existing public education programs to include ME/CFS and post-viral disease information, with a focus on early diagnosis.

It is essential that as many co-sponsors as possible join this action in a united voice to call for increased funding for post-viral research into ME/CFS.

Please contact your Representative TODAY and ask them to ask them to join this effort.



April 29, 2020- Five Actions to Take for ME/CFS Advocacy Week

This year our ME/CFS Advocacy Week will take place online from April 19 to April 26, 2020. Stay home, stay safe, and make your voice heard by phone, email, and social media!


February 13, 2020 – Add your name to our Congressional “Thank You letter!

2019 was been record-breaking for ME/CFS with unprecedented response and mobilization from our representatives in Congress. SIXY-THREE members of the House and Senate (11%!) signed our appropriations requests. As September 30 rapidly approaches, Solve ME is writing each of these members to thank them for supporting us during this year’s appropriations process.

If you’d like to join us, please add your name to our “Thank you!” letter.


February 6, 2020 – ME/CFS Action for Florida – Feb 12th Deadline!

The Solve ME/CFS Initiative (Solve M.E.) is teaming up with local advocates and people with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) across Florida. Your Congressmen Gus Bilirakis and Darren Soto are leading the whole Florida Congressional delegation to sign a letter to National Institutes of Health (NIH) Director, Dr. Francis Collins, urging more funding for research on ME/CFS.

We need Florida people with ME/CFS, caregivers, and loved ones to take action! Tell your Representative:

Please sign the Florida delegation ME/CFS letter to NIH. Contact Shayne in the office of Congressman Bilirakis to join.

Deadline is End of Day Tuesday February 12.


June 18, 2019 – 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.

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.


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.


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


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)
  • The Solve M.E. Community Advisory Council
  • 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 2020
    • Solve M.E. COVID-19 Congressional Recommendations (PDF)
    • Congressional Educational Video (YouTube)
    • Could the coronavirus trigger post-viral fatigue syndromes? (NewScientist)
    • Scientists warn COVID-19 could lead to neurological complications in some patients (The Globe and Mail)
    • The other potential coronavirus catastrophe no one is talking about (The Canary)
    • House FY21 Appropriations Letters (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)


Solve M.E. Position Statements and Letters

November 15 – Petition to Fix the Catastrophic Lack of ME/CFS Case Tracking in the U.S. Signed by 3,193
November 3 – Solve M.E. Letter to the Senate HELP Committee for the Road Ahead for the COVID-19 Response Hearing
October 21 – Solve M.E. Signs Research!America Letter Urging Congress to Complete the Fiscal Year 2022 Appropriations Process Before the Current CR Expires on December 3, 2021
October 1 – Solve M.E. Signs Research!America Letter Urging Congress to Complete the Fiscal Year 2022 Appropriations Process Before the Current CR
July 8 – Solve M.E. Joins 37 Organizations of the Defense Health Research Consortium (DHRC) to Express Support for Peer Review Grant Process at the Congressionally Directed Medical Research Program (CDMRP)
May 21, 2021 – Solve M.E. Joins Over 120 Organizations In Requesting Continued Support for Defense Health Research Programs Through the Congressionally Directed Medical Research Programs (CDMRP) at the Department of Defense (DoD). *Companion Letter Sent to House
May 6, 2021 – Solve M.E. and 50 Organizations Join AAPM&R’s Call for a Federal Commission to Develop a Comprehensive National Plan to Defeat the Long COVID Crisis
April 28 – Solve M.E. Joins Over 100 Organizations In Requesting Funding for Consumer Assistance Program (CAPs)
April 16, 2021 – Solve M.E. Signs Cigna Letter to Patients & Providers Regarding the Use of Cosentyx
April 2, 2021 – Solve M.E. Signs Letter  in Response to MACPAC’s Proposed Differential Rebate Models for Accelerated Approval Drugs
April 1, 2021 – Solve M.E. Signs Letter in Support of the Establishment of a new Health Advanced Research Projects Agency (HARPA)
March 24, 2021 – Solve M.E President Oved Amitay Responds to Wall Street Journal Op-Ed Citing False Information About ME/CFS and Long COVID
March 24, 2021 – Solve M.E. Joins 200 Organizations Requesting President Biden and Congressional Leadership Champion the Research Investment to Spark the Economy (RISE) Act
February 25, 2021 – Solve M.E. and 49 Other Members of the Long COVID Alliance Make Recommendations to the National Institutes of Health (NIH)
February 2, 2021 – Solve M.E. and 10 Other ME/CFS Organizations Sign Letter to Congress Recommending Additional Priorities for Upcoming Federal 2021 COVID-19 Relief Package
December 18, 2020 – Solve M.E. Calls for Retraction, Correction of Misleading Information about ME/CFS in Psychology Today
December 10, 2020 – Solve M.E. Joins 57 Other Organizations In a Call to Action for Health Equity
December 4, 2020 – Sign-On Letter to Leader McConnell and Speaker Pelosi from Research!America
December 4, 2020 – Solve M.E. Signs Letter with 20 Other Chronic Disease Stakeholders in Push for Federally Funded Research into Long COVID
September 8, 2020 – Public Comments – Solve M.E. calls for ME/CFS Federal Advisory Committee Reinstatement at Office of Women’s Health
September 3, 2020 – Public Comments – Solve M.E. calls for Prioritization of people with ME/CFS in COVID-19 Vaccine Distribution
July 13, 2020 – Solve M.E. Signs Letter  to Congress Outlining Urgent Nonprofit Policy Priorities in Reforms to CARES Act
July 10, 2020   Solve M.E. Signs Letter to Congress Supporting Policies to Protect and Accommodate the Immunocompromised During the Pandemic
June 11, 2020 – H.R. 7057, The Understanding COVID-19 Subsets and ME/CFS Act
May 6, 2020 – Support Research Protections for Non-Profits in COVID-19 response
April 9, 2020 – Solve M.E. Signs Letter Urging Congress to Expand Paid Leave for People with Chronic Health Conditions
February 18, 2020 – H.R. 913, The CLINICAL TREATMENT Act – Endorsement
February 6, 2020 – Friends of PCORI – Health Extenders Package
January 31, 2020 – Public Comments – Docket No. SSA-2018-0026: Rules Regarding the Frequency and Notice of Continuing Disability Reviews
November 22, 2019 – Trial By Error: Open Letter to Dr Godlee about BMJ’s Ethically Bankrupt Actions
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