ME/CFS Advocacy update — Mar 2026

Advocacy Week happening now. NIH Roadmap on the clock. Budget wins secured but funding gap persists.

🧵 #MECFS #LongCovid #NotJustFatigue #pwME

In Her Own Words: Elizabeth Ansell documents economic impact of chronic illness - The Business Journals Elizabeth Ansell transformed her chronic fatigue syndrome diagnosis into advocacy that secured congressional recognition and NIH funding for the overlooked disease.

Feb. 2026, Business Journal: In Her Own Words: Elizabeth Ansell documents economic impact of chronic illness

'What started as a personal battle with ME/CFS..no FDA-approved treatment, became the foundation for creating an award-winning nonprofit, #NotJustFatigue'
www.bizjournals.com/bizwomen/new...

Our request builds on our advocacy work in partnership with #NotJustFatigue. Our state chapter members & advocates helped to make this directive from Congress happen: NIH is “to provide a detailed implementation plan [for the Roadmap] to the Committee within 180 days of enactment.”

Road with various flags labeled "NIH ME/CFS Research roadmap" on the left with text on right "#MEAction, #NotJustFatigue, and Solve M.E. have sent a joint letter to the Senate Appropriations Subcommittees asking them to dedicate funding to support implementation of the ME/CFS Research Roadmap."

#MEAction #NotJustFatigue and @solveme.bsky.social ME/CFS Initiative have sent a joint letter to the Senate Appropriations Subcommittees asking for dedicated funding of no less than $50 million to start implementing the ME/CFS Research Roadmap in the FY27 Labor HHS appropriations bill.

"Our recent Invisible Illness Report became the first comprehensive economic impact study, revealing that 94% of people with ME/CFS experience career changes with an average 42.8% income reduction. We weren't just advocating for health — we were documenting an economic crisis."

#NotJustFatigue

In Her Own Words: Elizabeth Ansell documents economic impact of chronic fatigue syndrome Photo of Elizabeth Ansell

Nice to read this piece on the background to #NotJustFatigue :
"In Her Own Words: Elizabeth Ansell documents economic impact of chronic fatigue syndrome"

www.bizjournals.com/bizwomen/new...

I can relate to needing to prioritise about what I spent my energy on

#MEcfs #CFS #PwME

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A large alarm clock with a road going behind it against a cream background. Text: The Clock is Ticking. The NIH has been directed by Congress to come up with a plan to implement the ME/CFS Research Roadmap in 6 months.

The clock is ticking. The NIH now has 180 days to develop an implementation plan for the ME/CFS Research Roadmap. In 6 months, we SHOULD have a plan to implement the NIH’s roadmap for biomarkers, treatments & clinical trials.

#MEAction partnered with #NotJustFatigue to secure this support.

#NIH

#NOTJUSTFATIGUE LIVESTREAM Thursday, September 25 3:00-3:30 PM ET SUFFERING IN SILENCE: THE URGENT CASE FOR CONGRESSIONAL ACTION ON ME/CFS

The #NotJustFatigue group has posted a recording of their September 25 livestream event.

www.notjustfatiguelivestream.org

#MEcfs #CFS #PwME

#NOTJUSTFATIGUE LIVESTREAM Thursday, September 25 3:00-3:30 PM ET SUFFERING IN SILENCE: THE URGENT CASE FOR CONGRESSIONAL ACTION ON ME/CFS

The #NotJustFatigue group has posted a recording of their September 25 livestream event.

www.notjustfatiguelivestream.org

#MEcfs #CFS #PwME

ME/CFS is #notjustfatigue, featuring Founder Elizabeth Ansell Podcast Episode · Chronic Illness Support: That Chronic Thing · 09/25/2025 · 25m

'ME/CFS is #notjustfatigue, featuring Founder Elizabeth Ansell'

'..That Chronic Thing, Cathy chats with Elizabeth Ansell (Founder, Executive Director) of notjustfatigue.org, dedicated to the education & advocacy of Myalgic Encephalomyelitis..'

podcasts.apple.com/us/podcast/m...

Home | NJF - 2025 Livestream

#NotJustFatigue "Suffering in Silence: The Urgent Case for Congressional Action on ME/CFS"

Livestream event on Sept 25, 3:00 to 3:30 PT. Includes an online briefing & moderated question/answer period (submit questions in advance).

www.notjustfatiguelivestream.org

#MEcfs #CFS #PwME

(A screenshot from the event page: with a banner with the text "On the Human and Economic Burden of ME/CFS, the NIH Research Roadmap," #NotJustFatigueLivestream, This event is scheduled for September 25 - with a background of a scientist looking at a test tube.) This first-of-its-kind livestream briefing puts policymakers face-to-face with the lived reality of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)—a complex, disabling disease that has too often been overlooked by federal institutions. While many people with ME/CFS are too sick to travel to Washington or participate in traditional advocacy, this virtual event bridges that gap—featuring direct testimony from leading researchers, award-winning journalists, and patients themselves. In just 30 minutes, attendees will gain a clear, personal, and scientific understanding of what’s happening in the field, why the NIH’s ME/CFS Research Roadmap matters, and how Congress can help accelerate meaningful progress.

Sept 25 at 3PM ET: Join the #NotJustFatigue ME/CFS livestream briefing. 30 mins of research, lived experience & policy: featuring Dr. Lipkin, Ryan Prior, Elizabeth Ansell & more. Premieres video on Dr. Maureen Hanson's work.
Register: www.notjustfatiguelivestream.org

Social Impact Heroes: Why & How Elizabeth Ansell Of #NotJustFatigue Is Helping To Change Our World An Interview With Stanley Bronstein

Authority Magazine: "Social Impact Heroes: Why & How Elizabeth Ansell Of #NotJustFatigue Is Helping To Change Our World"

'Elizabeth developed ME/CFS in her early teenage years..she created #NotJustFatigue to speak out about ME/CFS and address the knowledge gap...'

medium.com/authority-ma...

Celebrating A Big Senate Win

#MEAction: "Celebrating a Big Senate Win"

'The Senate Appropriations Committee included the roadmap in their report! This is a big step in the right direction. Everyone’s advocacy, including the work of #NotJustFatigue and Solve M.E. have led to this step. '

mailchi.mp/meaction/cel...

Creating an Advocacy Movement with #NotJustFatigue’s Elizabeth Ansell: Part Two In part two of this episode, Elizabeth Ansell, founder of #NotJustFatigue, shares her journey with ME/CFS and highlights the need for education around the condition. Dr. W. Ian Lipkin joins to explain...

7/17/25, Brain & Life: "Creating an Advocacy Movement with #NotJustFatigue’s Elizabeth Ansell: Part Two"

'Joined by Elizabeth Ansell, founder & director of #NotJustFatigue. Dr. Lipkin discusses what’s next in ME/CFS research and what the future could hold'

www.brainandlife.org/podcast/crea...

Creating an Advocacy Movement with #NotJustFatigue’s Elizabeth Ansell: Part One In part one of this episode, Elizabeth Ansell, founder of #NotJustFatigue, shares her journey with ME/CFS and highlights the need for education around the condition. Dr. W. Ian Lipkin joins to explain...

7/10/25, Brain & Life: 'Creating an Advocacy Movement with #NotJustFatigue’s Elizabeth Ansell: Part One'

'Joined by Elizabeth Ansell, founder & director of #NotJustFatigue & then joined by Dr. Ian Lipkin, who is known internationally for his ME/CFS research'

www.brainandlife.org/podcast/crea...

I’m Tired of Chronic Fatigue Syndrome Being Misunderstood (HealthyWomen) As told to Jacquelyne Froeber I moved to Manhattan in my early 20s for a job in television production. I worked as a producer for shows on ABC News and Show...

"I’m Tired of Chronic Fatigue Syndrome Being Misunderstood" #MECFS #NotJustFatigue (healthywomen) www.smartnews.com/en-us/articl...

🎙️ New Episode Drop!
We talk with #NotJustFatigue founder Elizabeth Ansell about building a disability activist movement—all from bed while living with #MECFS. 💪🛌

🔥 Don’t miss this one!

#DisabilityTwitter #ChronicIllness #Spoonie #Accessibility #DisabilityRights ♿✨

🎧 Listen now

Once you're logged in, casting a daily vote for @notjustfatigue.bsky.social is a matter of two clicks :). (I keep the window open & visit with my first cup of coffee.)
Let's help #NotJustFatigue reach many viewers w their excellent work on #MyalgicEncephalomyelitis!
shortyawards.com/17th/notjust...

Got my Saturday voting in. (Remember we can vote daily friends!)
Have you checked out the site and its excellent history of #MyalgicEncephalomyelitis ?
#GreatestMEdicalScandal
#NotJustFatigue @notjustfatigue.bsky.social

We can vote daily and in both categories for #NotJustFatigue @notjustfatigue.bsky.social ❤️
(I've just cast my daily votes)

Some Things I’ve Read Recently…in STAT, The Sick Times, Van Der Zee’s Blog Embedding ME/CFS in NIH’s RECOVER initiative Ian Lipkin is a well-known professor of epidemiology at Columbia University and director of the Center for Solutions for ME/CFS, funded by the U.S. National Institutes of Health (NIH). In a recent opinion piece for STAT, he and ME/CFS patient advocate Elizabeth Ansell, the founder and executive director of […]

#NotJustFatigue Video Series: Interview with Creator Elizabeth Ansell Over the past year, the #NotJustFatigue website, created by Elizabeth Ansell, releases a 10-part, documentary style, short form video series on different aspects involved in living with ME. Titles of ...

Have you seen any of the #NotJustFatigue videos? Wondered about who made them & why?
We reached out to the creator, Elizabeth Ansell, to discuss how this series came to be & the behind-the-scenes work that went into producing these videos. Full interview: www.meaction.net/2025/01/13/n...

oh there’s another movie about #mecfs it’s on this website how nice

i can’t watch it now but i will when i can. slowly. sharing so more people can find #NotJustFatigue

#pwme #NEISvoid #MyalgicE

#NotJustFatigue - Home Myalgic Encephalomeyelitis, a disease commonly known as “Chronic Fatigue Syndrome” or “ME/CFS”, is a severely debilitating physiological illness. Of those suffering, 75% are unable to attend school or...

From: #NotJustFatigue

Have you seen our new video series page on our website? All ten of our short form, docustyle, educational videos in one place! Be sure to check it out at notjustfatigue.org

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

#NotJustFatigue - Home Myalgic Encephalomeyelitis, a disease commonly known as “Chronic Fatigue Syndrome” or “ME/CFS”, is a severely debilitating physiological illness. Of those suffering, 75% are unable to attend school or...

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Please do check out the website for her non-profit #Notjustfatigue www.notjustfatigue.org which hosts the full 15-minute video

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MEawareness

This is one of 2 trailers for the #Notjustfatigue 15-minute documentary on ME/CFS

Elizabeth has posted this video already on her #Notjustfatigue social media accounts & has kindly given me permission to share it on some other social media platforms I'm on.

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