March 10, 2026
Medical Gaslighting Is Real. So Is the Damage It Causes.
Our latest video tackles medical gaslighting head-on: what it looks like and why it happens.
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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.
March 5, 2026
Funding the Roadmap: Our FY27 Appropriations Letter to Congress
The ask is specific: resources directed to the Office of the Director to support implementation of the NIH ME/CFS Research Roadmap, including biomarker discovery, diagnostic tool development, and clinical trials.
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February 13, 2026
Progressing the Roadmap: Our Letter to NIH
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
“In Her Own Words”: Bringing the Reality of ME/CFS Into the Open
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
Congressional Milestone: ME/CFS Language Advances to the President’s Desk
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
500,000 People and Growing: The Reach of #NotJustFatigue
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
FY26 Labor-HHS Update: What the Joint Explanatory Statement Means for ME/CFS
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 Long-Overdue Shift: ME/CFS Named a Priority in Nature
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
Local Voices, Real Impact: Why Our Founder’s CT Mirror Op-Ed Matters for ME/CFS Advocacy
“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
The Trailer Is Live: A Glimpse Into the Reality of ME/CFS
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
“Symptomsplaining”: The Dismissal Too Many Patients Know Too Well
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
A Kinder Season: Our Holiday Survival Guide for Chronic Illness
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
Long Covid Weekly Highlights the Economic Reality of ME/CFS
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.
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