Bringing the Roadmap to Congress and HHS

May 17, 2026

Last week, #NotJustFatigue was in Washington, D.C. for ME/CFS Awareness Day, joining advocates at #MEAction’s MillionsMissing event outside HHS and meeting with congressional offices to build support for dedicated NIH funding for the ME/CFS Research Roadmap.

The ask is specific: fund Roadmap implementation, including biomarker discovery, diagnostic tool development, and clinical trials. NIH has approved it. Congress has recognized it. Now it needs to be funded.

In meetings with House and Senate offices across eight states, our message was clear: awareness is not enough. People with ME/CFS need research infrastructure, diagnostics, and treatments. The Roadmap gives NIH a path forward. Congress needs to open that path with real investment.

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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