Statement by Solve ME/CFS Initiative (Solve ME) on Senate Resolution and Labor-HHS-Education Markup
May 9, 2019


“May 8th was a Landmark Day for ME/CFS on Capitol Hill.”
 – Emily Taylor, Solve ME/CFS Initiative Director of Advocacy and Community Relations


Yesterday, Senators Ed Markey of Massachusetts and Susan Collins of Maine initiated a bi-partisan Senate Resolution entitled Supporting the goals of International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day.” This multi-year effort was a collaboration between Solve ME, #MEAction and the Massachusetts ME/CFS & FM Alliance. The resolution is expected to pass early next week.

On the same day, the House Appropriations Committee passed the FY20 Labor, Health and Human Services, and Education legislation without including the additional $4.5 million for ME/CFS programming as requested by 45 bipartisan Members of Congress.[i] While we are disappointed that the members of the House Appropriations Committee did not recognize the critical importance of improving the federal response to ME/CFS, we applaud the strong Committee report language directed to the Department of Health and Human Services (HHS) and the National Institutes of Health (NIH).

The House Appropriations Committee demonstrated strong oversight and leadership by asking:

that HHS submit a plan within 90 days of enactment of this Act outlining how the Department intends to address the crisis in ME/CFS clinical care; accelerate drug development for ME/CFS; and collaborate across HHS agencies and stakeholders.”[ii]

We also commend the Committee for its effective guidance to the NIH by encouraging the agency:

“to expand ME/CFS efforts such as (1) new ME/CFS disease specific funding announcements, including those with set-aside funds, to deliver needed diagnostics and treatments as quickly as possible, (2) an initiative to reach consensus on the ME/CFS case definition, and (3) mechanisms to incentivize researchers to enter the field.”[iii]

Solve ME also applauds the Committee for providing an additional $2 billion for the NIH. We strongly urge the NIH to utilize the discretionary portions of this increase in discovering answers for ME/CFS, which has been labeled “America’s Hidden Health Crisis”[iv] by the Centers for Disease Control and Prevention (CDC). The Committee’s proposed legislation also includes a desperately needed increase of almost $1 billion for the CDC, which operates the only federal program specifically addressing ME/CFS medical education.

Solve ME calls upon Senate Labor-HHS-Education Subcommittee Chair Roy Blunt and Ranking Member Patty Murray to honor the urgent request from their 17 Senate colleagues by increasing funding for the CDC ME/CFS program by $4.5 million. Now, the fate of this funding increase falls to the Senate Appropriations Committee who will decide if the government takes action on this crucial issue.

Over the past six months, the Solve ME’s advocacy work, in collaboration with others, has included:

  1. Urging the House of Representatives to increase funding for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) programs,
  2. Collaborating with Senate champions and partners to raise awareness of ME/CFS, and
  3. Encouraging Congress to provide strong direction to federal agencies about ME/CFS.

We are also extraordinarily grateful to Senators Markey and Collins and Congresswomen Zoe Lofgren and Ana Eshoo for working tirelessly to elevate investment and understanding for ME/CFS and also to the 62 bi-partisan Senators and Representatives who stood together as champions for Americans with ME/CFS.

While these events have fallen far short of what is needed for up to 2.5 million Americans with ME/CFS, the actions by Congress this week are a significant step forward for the future of ME/CFS.

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About Solve ME/CFS Initiative (Solve M.E.)
SOLVE ME/CFS INITIATIVE is a non-profit disease organization that works to accelerate the discovery of safe and effective treatments for ME/CFS, strives for an aggressive expansion of research funding that will lead to a cure, and seeks to engage the entire ME/CFS community in research and advocacy. SMCI serves patients and researchers alike, acting as an information and data hub for the ME/CFS community. Our strategic investments in research move the field forward collaboratively and strengthen the case for increased federal spending.      www.solvecfs.org

[i] https://solvecfs.org/wp-content/uploads/2019/05/LHHS-FY20-ME-CFS-Research-FINAL-HOUSE.pdf

[ii] https://appropriations.house.gov/sites/democrats.appropriations.house.gov/files/FY2020%20LHHS_Report.pdf (pg. 160)

[iii] https://appropriations.house.gov/sites/democrats.appropriations.house.gov/files/FY2020%20LHHS_Report.pdf (pg. 109)

[iv] https://blogs.cdc.gov/publichealthmatters/2017/05/me-cfs/