#NotJustFatigue Featured in Health Rising: Our Advocacy Is Making Waves

June 5, 2026

We’re honored to be featured in a new piece by Cort Johnson on Health Rising — one of the most widely read ME/CFS blogs in our community — alongside major organizations including #MEAction and Dysautonomia International.

Cort published a comprehensive look at where ME/CFS, Long COVID, POTS, and post-infectious disease stand at the NIH. Our founder Elizabeth Ansell is featured — discussing her personal health struggles, founding #NotJustFatigue, and our federal advocacy efforts.

Two years of behind-the-scenes advocacy resulted in language in the 2026 Labor-HHS appropriations bill directing the NIH to produce a ME/CFS Research Roadmap implementation plan and report back in August. Our coalition has made a coordinated push for $50M in the 2027 appropriations bill to fund it.

This is what sustained, strategic advocacy looks like. Read Cort’s full piece to understand what we’re up against, and why we’re not giving up.

https://www.healthrising.org/blog/2026/06/05/elephant-nih-long-covid-mecfs-pots/

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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