Funding the Roadmap: Our FY27 Appropriations Letter to Congress
March 5, 2026
On March 5, 2026, #NotJustFatigue sent a formal letter to the chairs and ranking members of the Senate and House Labor-HHS Appropriations Subcommittees, urging them to include $50 million in dedicated ME/CFS funding in the FY27 appropriations bill. The letter was co-signed by MEAction and Solve M.E. The ask is specific: resources directed to the Office of the Director to support implementation of the NIH ME/CFS Research Roadmap, including biomarker discovery, diagnostic tool development, and clinical trials.
Last year, Congress took a meaningful step by recognizing the Roadmap and directing NIH to produce an implementation plan. FY27 is the moment to back that direction with actual dollars. A framework without funding is just a document. What patients need — what they have always needed — is execution.
For a disease affecting millions of Americans with no FDA-approved treatment and no validated diagnostic test, the stakes of inaction are not abstract. This letter is our push to make sure the Roadmap becomes a real vehicle for progress rather than another plan that acknowledges the problem without changing outcomes.