Winning and Waiting: A Federal Funding Update for ME/CFS

What you Need to Know:

  • The Senate Appropriations Committee included our ME/CFS Advocacy Day request for Defense.
  • If approved in the final budget, ME/CFS will be an eligible topic area for the Peer-Reviewed Medical Research Program (PRMRP), which is funded at $350 million next year.
  • If the combined Senate and House bills pass, ME/CFS researchers could apply for up to $360 million in new defense research funding in FY 20.
  • We are *still* waiting for the Senate committees to consider our other non-defense requests for ME/CFS funding.
  • Take a moment to say “Thank you” to our Senate champions.

Defense request: We won!

As part of ME/CFS Advocacy Day in April, we requested that ME/CFS be added to the Peer-Reviewed Medical Research Program (PRMRP). Our request was heard!

Last week, the Senate Appropriations Committee advanced its FY2020 Defense Funding Bill including full funding of the PRMRP at $350 million, despite the earlier House version of the legislation which eliminated the program. If the S. 2474 remains unchanged during the remainder of the budget process, next year ME/CFS will be an eligible research topic area in the PRMRP.

This is a very different outcome than our earlier update from the House in July. The House included excellent committee report language directing agencies to act on ME/CFS, yet did not increase the existing budget for ME/CFS. The also House decided to eliminate the PRMRP, but instead added ME/CFS into the “Combat Readiness” research program with $10 million of potential grant funding for ME/CFS researchers. If the House and Senate versions are combined in the final budget, ME/CFS researchers could apply for up to $360 million in new defense research funding in FY 20.

Labor-HHS request: We are still waiting.

As part of ME/CFS Advocacy Day in April, we also requested an increase to $9.9 million for ME/CFS programs at the Centers for Disease Control (CDC). The House did not accept this request and the Senate Appropriations Subcommittee continues to postpone hearings regarding Labor, Health and Human Services, Education, and Related Agencies (Labor-HHS). These hearings will decide the fate of our $9.9m funding request. Currently, the Senate Appropriations Subcommittee has not scheduled a hearing date and many believe there will be a Continuing Resolution. If that occurs, ME/CFS will continue to be funded at $5.4m (the same level as FY19) in the Labor-HHS component of the federal budget.

While we continue to wait for news about Labor-HHS, the Defense bill now awaits action by the full Senate before the end of the fiscal year on September 30, 2019.

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