NotJustFatigue

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history

#NotJustFatigue is a 501(c)(3) nonprofit, patient-led advocacy organization dedicated to increasing public awareness, research investment, and policy inclusion for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Founded by Elizabeth Ansell, the initiative addresses longstanding under-recognition, stigma, and inadequate research funding of ME/CFS through digital media initiatives and policy engagement.[1][2] Through personal testimonies and Ansell’s own history with ME/CFS, #NotJustFatigue aims to connect patient experience with scientific research and federal policy discussions.[2][3] #NotJustFatigue seeks to clarify ME/CFS as a serious, multi-system neuroimmune, neuroinflammatory illness rather than a condition defined by tiredness. Central to its messaging is the clarification that ME/CFS is characterized by post-exertional malaise (PEM), which worsens with physical, mental, or emotional exertion.[2] The organization works to reduce stigma and improve quality of life for affected individuals.[2]

Founding and Origins

#NotJustFatigue was founded in 2017 by Elizabeth Ansell due to her experience with severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).[1][2] In interviews, Ansell has described developing the non-profit while largely bedbound, motivated by concerns about stigma, delayed diagnosis, and limited federal research funding for ME/CFS.[2]

The name “#NotJustFatigue” was selected to challenge the misconception that ME/CFS is synonymous with ordinary tiredness, emphasizing instead its multi-system pathology and hallmark symptom of post-exertional malaise (PEM).[2]

Although founded earlier, the organization’s award-winning website (www.notjustfatigue.org) formally launched in March 2024, marking the public debut of its educational and awareness efforts.[1]


Media and Public Education

The #NotJustFatigue website features a personal documentary short film and an animated historical timeline examining the historical context and scientific evolution of ME/CFS. Its present-focused section includes a photodocumentary series pairing portraits with patient narratives to illustrate the lived experience of individuals with ME/CFS. The site’s future section encourages public engagement through shareable graphics and social media participation using the hashtag #NotJustFatigue, aimed at increasing awareness of the disease. [1]

Following the public release of the website, #NotJustFatigue began a coordinated multimedia rollout, releasing video content approximately every two weeks during the summer and fall of 2024. Early projects focused on patient experience and educational content aimed at improving public understanding of ME/CFS.[1]

Additionally, the organization later produced short-form documentary videos with researchers, including Dr. W. Ian Lipkin and Dr. Maureen Hanson. [4][5]

In September 2025, #NotJustFatigue also hosted a policy-focused livestream event: “Suffering in Silence: The Urgent Case for Congressional Action on ME/CFS”.[6]

In December 2025, the organization released Symptomsplaining, an educational short video examining the dismissal and second-guessing of chronic illness symptoms, particularly as experienced by individuals with ME/CFS. [7]

Policy Advocacy and Federal Engagement

Beginning in 2024, #NotJustFatigue initiated ongoing federal advocacy efforts aimed at getting ME/CFS included in the Long COVID Recover Initiative. In 2025, #NotJustFatigue partnered with MEAction to advocate for Congressional acknowledgement of the ME/CFS Research Roadmap. [3]

In August 2025, the L-HHS Senate appropriations report language formally recognized the ME/CFS Research Roadmap and directed the National Institutes of Health (NIH) to develop a detailed implementation plan within 180 days. The Senate report also called for expanded research through the RECOVER Initiative and ARPA-H, specifically naming ME/CFS as a priority and referencing recommendations advanced by ME/CFS researchers. [8][9]

This bill was signed on February 3, 2026, representing one of the most explicit federal acknowledgments of ME/CFS research needs in recent years. [10][11]

Advocacy activities included meetings with congressional offices, coordination with researchers, facilitation of expert letters, incorporation of patient testimony, and more, emphasizing the need for biomarkers, diagnostic tools, and clinical trials. [3]

Invisible Illness Report

In May 2025, #NotJustFatigue published the Invisible Illness Report: The Economic Impact of ME/CFS in 2025.[5] The report analyzed the economic burden of ME/CFS in the United States, including lost productivity, out-of-pocket medical expenses, and broader societal impact.[12]

The report was referenced in health-focused publications including STAT News and other outlets covering ME/CFS and Long COVID research developments.[13][14]


Recognition and Broader Impact

Since its launch, #NotJustFatigue has received coverage and published opinion commentary in local, national and health-focused publications including STAT News, HealthyWomen, Health Rising, The Connecticut Mirror, and Authority Magazine.[14][15][16]

The organization’s website received multiple awards including recognition from the Webby Awards and Shorty Awards.[17]

Through its combined focus on storytelling, economic analysis, and legislative engagement, #NotJustFatigue has positioned ME/CFS within broader discussions of post-viral disease, research equity, and public health funding.[12][14]

Mission and Goals

#NotJustFatigue is a 501(c)(3) nonprofit organization focused on raising awareness of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), advocating for individuals affected by the disease, and advancing research and policy engagement at the federal level.[1] Its goals include improving public understanding of ME/CFS, promoting earlier diagnosis and better access to care, and securing sustained biomedical research funding.[6][7]

ME/CFS is a debilitating, multi-system illness affecting at least 3.3 million Americans.[18] Despite its severity and high rate of disability, there are no FDA-approved treatments, validated biomarkers, or definitive diagnostic tests.[19] The organization works to address stigma, correct misconceptions, and elevate ME/CFS within broader discussions of post-viral illness and public health policy through multimedia education and legislative advocacy.[2][4][19]

Multimedia

Animation

  • Symptomsplaining — #NotJustFatigue, December 2025.[7]
  • A History of ME/CFS (Animated historical timeline) — #NotJustFatigue, March 2024.[1]

Film and Video

  • #NotJustFatigue trailer — December 2025.
  • ME/CFS Research Series: NIH ME/CFS Collaborative Research Center – W. Ian Lipkin — October 2025.[4]
  • ME/CFS Research Series: NIH ME/CFS Collaborative Research Center – Maureen Hanson — October 2025.[5]
  • 10-part documentary video series — May–September 2024.[1]

Selected titles from the 2024 series:

  • All Talk, No Action — September 2024.
  • When Friends and Family Don’t Understand — September 2024.
  • Explain ME/CFS To Me — August 2024.
  • It’s Not Hysteria; It’s Sexism — August 2024.
  • Nobody Believes Me — July 2024.
  • POV: I Went Over My Energy Limit — July 2024.
  • Get Out Of My Office — July 2024.
  • You Have No Idea How Serious This Is — June 2024.
  • Spend A Day With Me — June 2024.
  • You Could Be Next — May 2024.
  • #NotJustFatigue documentary featuring Elizabeth Ansell and her family — March 2024.[1]

Livestream

  • Suffering in Silence: The Urgent Case for Congressional Action on ME/CFS — September 2025.[6]

Photography

  • Photodocumentary series featuring individuals with ME/CFS and accompanying narrative quotes — March 2024.[1]


Media and Press

Coverage and Mentions

  • Long Covid Weekly #159: The Science of a Long COVID Recovery Score — Long Covid Weekly, November 2025.[13]
  • I’m Tired of ME/CFS Being Misunderstood — HealthyWomen, June 2025.[16]
  • FDA eyes additional Covid vaccine trials, as WHO suggests no update to Covid shot — STAT News, May 2025.[14]
  • A Search for Treatments Pervades New Efforts on Long COVID and ME/CFS — Health Rising, December 2024.[15]

Op-eds

  • NIH Must Address the Twin Crises of Long Covid and ME/CFS — STAT News, February 2025.[3]

Interviews and Podcasts

  • Creating an Advocacy Movement with #NotJustFatigue’s Elizabeth Ansell: Part One — Brain & Life, July 10, 2025.[2]
  • #66 Not Just Fatigue: Global Advocating for ME/CFS from Bed — It Happened To Me Podcast, August 2025.[19]


Educational Resources and Publications

  • Chronic Illness Guide to the Holidays — #NotJustFatigue, November 2025.
  • Invisible Illness Report: The Economic Impact of ME/CFS in 2025 — May 2025.[12]

References

  1. ↑ 1.00 1.01 1.02 1.03 1.04 1.05 1.06 1.07 1.08 1.09 “#NotJustFatigue”. #NotJustFatigue. March 2024. https://www.notjustfatigue.org. Retrieved 26 February 2026.
  2. ↑ 2.0 2.1 2.2 2.3 2.4 2.5 2.6 2.7 2.8 Ansell, Elizabeth (10 July 2025). “Creating an Advocacy Movement with #NotJustFatigue’s Elizabeth Ansell: Part One”. Brain & Life Podcast. American Academy of Neurology. https://www.brainandlife.org/podcast/creating-advocacy-moment-elizabeth-ansell-part-one. Retrieved 26 February 2026.
  3. ↑ 3.0 3.1 3.2 3.3 Ansell, Elizabeth (4 February 2025). “NIH Must Address the Twin Crises of Long Covid and ME/CFS”. STAT. https://www.statnews.com/2025/02/04/recover-initiative-nih-long-covid-me-cfs-post-viral-illness/. Retrieved 26 February 2026.
  4. ↑ 4.0 4.1 4.2 Lipkin, W. Ian (October 2025). “ME/CFS Research Series: NIH ME/CFS Collaborative Research Center – W. Ian Lipkin, MD”. #NotJustFatigue. https://www.instagram.com/reel/DPR1y_3CX4J/. Retrieved 26 February 2026.
  5. ↑ 5.0 5.1 5.2 Hanson, Maureen (October 2025). “ME/CFS Research Series: NIH ME/CFS Collaborative Research Center – Maureen Hanson, PhD”. #NotJustFatigue. https://www.instagram.com/reel/DPCirQpCfHQ/. Retrieved 26 February 2026.
  6. ↑ 6.0 6.1 6.2 “Livestream | Suffering in Silence: The Urgent Case for Congressional Action on ME/CFS” (25 September 2025). #NotJustFatigue. https://www.notjustfatiguelivestream.org/. Retrieved 26 February 2026.
  7. ↑ 7.0 7.1 7.2 “#NotJustFatigue: Symptomsplaining” (January 2026). #NotJustFatigue. https://www.instagram.com/notjustfatigue/reel/DSLx0sIiSt2/. Retrieved 26 February 2026.
  8. ↑ United States Senate (2025). Senate Report 118-207. Departments of Labor, Health and Human Services, and Education Appropriations Bill, 2025. https://www.congress.gov/committee-report/118th-congress/senate-report/207/1. Retrieved 26 February 2026.
  9. ↑ United States Senate (31 July 2025). Senate Report 119-55 (PDF). https://www.appropriations.senate.gov/imo/media/doc/fy26_lhhs_senate_report.pdf. Retrieved 26 February 2026.
  10. ↑ United States Senate Committee on Appropriations (3 February 2026). “Congress Approves FY 2026 Labor, Health and Human Services, Education Appropriations Bill”. https://www.appropriations.senate.gov/news/majority/congress-approves-fy-2026-labor-hhs-education-appropriations-bill. Retrieved 26 February 2026.
  11. ↑ United States House of Representatives (19 January 2026). Departments of Labor, Health and Human Services, and Education Appropriations Act, 2026 (PDF). https://docs.house.gov/. Retrieved 26 February 2026.
  12. ↑ 12.0 12.1 12.2 #NotJustFatigue (May 2025). Invisible Illness Report: The Economic Impact of ME/CFS in 2025. https://www.notjustfatigue.org/NotJustFatigue-Invisible-Illness-Report-2025.pdf. Retrieved 26 February 2026.
  13. ↑ 13.0 13.1 “Long Covid Weekly #159: The Science of a Long COVID Recovery Score” (11 November 2025). Long Covid Weekly. https://longcovidweekly.substack.com/. Retrieved 26 February 2026.
  14. ↑ 14.0 14.1 14.2 14.3 Branswell, Helen (16 May 2025). “FDA eyes additional Covid vaccine trials, as WHO suggests no update to Covid shot”. STAT. https://www.statnews.com/. Retrieved 26 February 2026.
  15. ↑ 15.0 15.1 Johnson, Cort (2 December 2024). “A Search for Treatments Pervades New Efforts on Long COVID and ME/CFS”. Health Rising. https://www.healthrising.org/. Retrieved 26 February 2026.
  16. ↑ 16.0 16.1 Ansell, Elizabeth (2 June 2025). “I’m Tired of ME/CFS Being Misunderstood”. HealthyWomen. https://www.healthywomen.org/. Retrieved 26 February 2026.
  17. ↑ Webby Awards; Shorty Awards; Muse Creative Awards (2024–2026). Awards listings recognizing #NotJustFatigue website and media content.
  18. ↑ Centers for Disease Control and Prevention (10 May 2024). “ME/CFS Basics”. https://www.cdc.gov/me-cfs/about/index.html. Retrieved 26 February 2026.
  19. ↑ 19.0 19.1 19.2 “#66 Not Just Fatigue: Global Advocating for ME/CFS from Bed.” It Happened To Me: A Rare Disease and Medical Challenges Podcast. https://www.ithappenedtomepod.com/. Retrieved 26 February 2026.
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