The Senate Just Included Our ME/CFS Language. Twice.

August 1, 2025

Big win. Congress has officially recognized the ME/CFS Research Roadmap in the Senate report and is now directing NIH to create a detailed implementation plan within 180 days. The language comes straight from our advocacy work alongside #MEAction, and it shows that this community’s voice is being heard at the highest levels.

But that’s not all. Last year, #NotJustFatigue exclusively advocated to secure formal recognition of ME/CFS within the RECOVER Initiative, and not only was that included again this year, it was expanded upon. The Committee adopted an updated version of the language we had previously secured, broadening it to include direction to both NIH and ARPA-H, and referencing many of the specific recommendations from the letter we helped facilitate from fellow ME/CFS researchers. Two wins in one report.

The House is expected to release its own version in the coming months before the two chambers reconcile. We’ll be fighting hard to keep this language intact, and we’re not stopping here.

GLOSSARY

CDC

The Center for Disease Control protects the United States’ health from threats using science and data

NIH

The National Institute of Health aims to discover new information that will result in better health for everyone

National Academies of Medicine

Previously called the Institute of Medicine, this nonprofit, private organization was created to advise the country on relevant issues

WHO

The World Health Organization works worldwide to promote health, promote safety, and serve the vulnerable

PACE

Short for “Pacing, graded Activity, and Cognitive behavioral therapy; a randomized Evaluation”

The Lancet

One of the world’s highest impact, most prestigious academic journals

FDA

The Food and Drug Administration protects American health by overseeing food, drugs, cosmetics, animal food, dietary supplements, medical devices, biological goods, and blood products

GLOSSARY

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