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Here we share our most recent activities, milestones, and advocacy efforts as we push for real awareness, research, and change. Stay informed, stay connected, and join us.
February 13, 2026
On February 13, 2026, we sent a formal letter to the Director of the National Institutes of Health urging decisive action on the ME/CFS Research Roadmap and its required implementation plan.
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February 4, 2026
Our founder shared a personal op-ed in BizWomen titled “In Her Own Words,” where she wrote candidly about her lived experience with ME/CFS and the economic and human impact of the disease.
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February 3, 2026
On February 3rd, a major development for the ME/CFS community moved one step closer to becoming law: the Labor–HHS appropriations bill passed Congress and just needs the President’s signature.
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January 30, 2026
More than 500,000 unique visitors from around the world have turned to NotJustFatigue.org to learn about this disease.
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January 20, 2026
The FY26 Labor-HHS joint explanatory statement is now out, and the package should be on track for passage by the January 30 deadline, or shortly thereafter.
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January 16, 2026
A newly published article in Nature outlining the National Institute of Allergy and Infectious Diseases’ updated vision explicitly names ME/CFS as a priority.
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December 24, 2025
“Washington is ignoring a $362 billion chronic illness” is sparking important conversations about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) at home and in Washington.
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December 20, 2025
We’ve just released our new trailer on social media, and it captures the heart of why #NotJustFatigue exists.
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December 12, 2025
We recently released a new video on social media highlighting a frustrating, but deeply familiar experience for people with chronic illness: symptomsplaining.
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November 12, 2025
The holidays are often framed as a time of joy, gatherings, and tradition. But for many people living with chronic illnesses such as ME/CFS, Long COVID, POTS, and autoimmune conditions, this season can bring unique challenges.
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November 11, 2025
We’re encouraged to see Long Covid Weekly spotlight #NotJustFatigue’s Invisible Illness Report, a first-of-its-kind survey examining the financial consequences of living with ME/CFS.
Read moreCDC
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
