Celebrating A Big Senate Win

#MEAction has been working hard with #NotJustFatigue to advocate for the ME/CFS Research Roadmap and it has paid off! The Senate Appropriations Committee included the roadmap in their report! This is a big step in the right direction. Everyone’s advocacy, including the work of #NotJustFatigue and Solve M.E. have led to this step. I am beyond grateful for our 1:1 meetings with senators, our #MillionsMissing events, the ME/CFS Research Roadmap letter sign-ons, and everything everyone has done to make this moment possible.

Read an excerpt of the report below:

Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome [ME/CFS] Research Roadmap.-The Committee recognizes the urgent need to advance research for ME/CFS, especially given its overlap with Long COVID and relevance across multiple ICs and commends NIH for approving the ME/CFS Research Roadmap. The Committee encourages NIH to implement the roadmap’s

recommendations, including advancing biomarker discovery, diagnostic tool development, and clinical trials. NIH is further directed to provide a detailed implementation plan to the Committee within 180 days of enactment.

Is there more work ahead? Absolutely. We have to continue our efforts to see this through. We will switch our attention to the House appropriations bill, ensure substantial money is allocated to the roadmap and that the NIH leadership follows through in the right direction.

But how about today we celebrate? This took real effort!