#NotJustFatigue urges Congress to Act on the ME/CFS Research Roadmap

July 28, 2025

#NotJustFatigue, as well as MEAction and Solve M.E. sent a letter to the Senate and House Appropriations Committees urging Congress to recognize the ME/CFS Research Roadmap, and direct NIH to implement it.

The Roadmap, finalized by NIH in 2024, is the first strategic, consensus-driven plan to transform federal ME/CFS research. It identifies urgent priorities including biomarker discovery, diagnostic tool development, and clinical trials. But without congressional action, it goes nowhere.

Millions of Americans with ME/CFS still have no FDA-approved treatments or diagnostic tools. The plan exists. It’s time for Congress to deliver.

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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