Previous Advocacy Actions page
Ask Your Representative to Co-sponsor H.R. 7057!
Solve M.E. was proud to endorse H.R. 7057, The Understanding COVID-19 Subsets and ME/CFS Act, to authorize a $60 million program expansion for ME/CFS research at the National Institutes of Health (NIH) and expand public and medical education ME/CFS initiatives.
Over 2,600 advocates took this online action, with more supporters calling their representatives and participating in meetings to ask their representatives to join in a united voice to call for increased funding for post-viral research into ME/CFS. 51 Representatives joined Representative Jamie Raskin as co-sponsors.
In December 2020, Congress approved $1.15 billion for Long Covid research and clinical trials, with $100 million specifically used for the Rapid Acceleration of Diagnostics.
$60 Million for ME/CFS and COVID-19 research
As the COVID-19 pandemic was beginning to spread throughout the United States, experts began to flag reports of COVID-19 survivors who weren’t getting better. Experts were sharing a story that people with ME/CFS recognize and know intimately: symptoms that included fever, brain fog, joint pain, and a body “made out of lead,” and “feeling like a dead battery.” ME/CFS epidemics have historically followed viral outbreaks and the majority of people with ME/CFS were triggered by a viral infection. Because of this, the field of ME/CFS research was needed more than ever to find answers and improve the lives of millions with ME/CFS and COVID-19.
As part of Advocacy Day 2020, Solve M.E. called for immediate response measures for ME/CFS in the next COVID-19 response package. Over 2,000 messages were sent to Congress recommending $60 million to be authorized for NIH post-viral neuroimmune research, specifically focusing on ME/CFS and COVID-19.
ME/CFS Action for Florida
Solve M.E. teamed up with local advocates and people with ME/CFS across Florida. Congressmen Gus Bilirakis and Darren Soto led the whole Florida congressional delegation to sign a letter to NIH Director Dr. Francis Collins, urging more funding for research on ME/CFS. Nearly 200 Flordians asked their representatives to sign onto the letter supporting ME/CFS biomedical research.
Add Your Name to our Congressional Thank You Letter!
2019 was a record-breaking for ME/CFS with unprecedented response and mobilization from our representatives in Congress. That year, 63 members of the House and Senate (11%!) signed our appropriations requests. Over 500 advocates joined Solve M.E. in writing each of these members to thank them for supporting us during this year’s appropriations process.
Tell Your Senator to SUPPORT A FUNDING INCREASE FOR ME/CFS Today!
Our champion Senator Markey led 18 other senators from both parties in requesting: 1) $9.9 million for ME/CFS programs at the Centers for Disease Control (CDC: Labor, Health and Human Services, and Education Subcommittee) and 2) that ME/CFS be added to the Peer-Reviewed Medical Research Program (Defense Subcommittee). Over 1,600 messages were sent to senators asking them to support these requests. ME/CFS was successfully added to the Peer-Reviewed Medical Research Program, resulting in over $500,000 of ME/CFS research funding in 2020. This also resulted in committee report language that 1) provided oversight and course correcting guidance to NIH ME/CFS investments 2) strengthened and reiterated congressional priorities for CDC and 3) instructed HHS to create a comprehensive plan for ME/CFS investments due March 2020. As of July 2021, HHS has still not yet submitted this report due to the pandemic.
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 and Gus Bilirakis 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 issue is vital for under-funded diseases, like ME/CFS, which struggles to secure funds for clinical trial research. Nearly 300 messages were sent requesting senators and Representatives to support this legislation and 61 representatives joined as cosponsors. This was signed into law on December 27, 2020 as part of the budget compromise, along with other provisions of the 21st Century Cures Act.
It’s Time for the U.S. Senate to Recognize ME/CFS!
Senators Ed Markey and Susan Collins introduced our resolution recognizing International ME/CFS Awareness day on May 12th. This resolution passed, recognizing May 12, 2019 as International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day and recognizing the continued importance of medical research, education, and awareness for ME/CFS.
Advocacy Action: Support a Funding Increase for ME/CFS!
In the House, Congressmembers Lofgren and Eshoo led 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 and 2) a letter to the Defense Subcommittee: Adding ME/CFS to the Peer-Reviewed Medical Research Program. Almost 700 messages were sent to representatives asking them to join these requests. This propelled the action to the senate, where Senator Markey led the requests. Nearly 1,300 messages were sent from advocates to their senators in support. In the end, 18 senators signed on to these letters.
Thanks to strong turnout from the ME/CFS advocacy community, who sent 1,791 messages, 44 Members of Congress joined together to sign this bipartisan letter to HHS in support of people with ME/CFS. The bicameral letter was sponsored by Senator Ed Markey in the Senate and Congresswoman Anna Eshoo 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). HHS was reprimanded by Congress in the budget committee report and instructed to submit a new plan to congress to address the issues and projects left open-ended by the sudden elimination of CFSAC. As of July 2021, HHS has still not yet submitted this report due to the pandemic, which was due in March 2020.
Chronic Fatigue Syndrome Advisory Committee Dissolved, We Demand Congressional Action!
Without any prior notice to committee members or the public, HHS announced that the CFSAC had completed its mission. Solve M.E. launched 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. Advocates sent 5,589 messages to both chambers of Congress as a part of this action.
Join Us Now to Bring ME/CFS Awareness to the U.S. Senate!
Senator Ed Markey introduced our resolution recognizing International ME/CFS Awareness day. Unfortunately, we were unable to successfully bring this resolution to the floor before the end of the 116th Congress. This resolution was eventually passed in 2019, recognizing May 12, 2019 as International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day and recognizing the continued importance of medical research, education, and awareness for ME/CFS.
Will Your Member of Congress Stand for ME/CFS?
As part of this joint action with #MEAction, 571 advocates sent a message to their representative asking them to join Congresswomen Ana Eshoo and Zoe Lofgren’s letter to the U.S. House of Representatives Appropriations Committee for ME/CFS funding and research. This letter requested: 1) continuation of the $5.4 million ME/CFS funding for the CDC 2) CDC to resolve ME/CFS case definition issues and expand its efforts to educate health care providers 3) NIH create a strategic plan for ME/CFS research and increase the amount and types of funding and 4) HHS to devise a multi-year strategic plan. The sign-on letter stated that the increases in NIH’s budget afforded NIH the opportunity and ability to increase funding to better reflect the ME/CFS disease burden. As a result, 43 members signed on to this letter.
Tell Congress To Give ME/CFS Research a Fighting Chance!
In 2017, we launched an initiative to include ME/CFS in defense research funding. Congress oversees a multibillion medical research budget independent from the NIH called the Congressionally Directed Medical Research Programs (CDMRP). In 2018, ME/CFS was not an eligible research topic area. As a part of this action, 3,285 messages were sent to Congress to request ME/CFS be added as an eligible research topic area. In 2019, this work led to over $500,000 in ME/CFS research grants and this initiative continues to fund ME/CFS researchers.