#NotJustFatigue

h/t @elizansell @njfatigue

Grateful to all these advocates for telling their story. This is my story too. #millionsmissing

Have you ever been medically gaslit by a medical professional? Do you have ME/CFS? If so, you’re not alone

Solve resolutely stands with @njfatigue and @MEActNet in advocating for funding for the @NIH Research Roadmap, to which so many members of our community have contributed. Onward!

#NotJustFatigue sent a joint FY27 appropriations request letter, co-signed by @MEActNet and @PlzSolveCFS that builds directly on the FY26 ME/CFS Research Roadmap direction and request for an implementation plan from NIH within 180 days. In short, the letter urges the Subcommittee to provide funding within the NIH Office of the Director for new and expanded ME/CFS research activities consistent with the Roadmap in FY27—including biomarkers, diagnostics, and interventional and clinical trials—so NIH has the resources to execute on the priorities Congress has already laid out.

Raise your hand if you’ve been medically gaslit?

@elizansell @TomKindlon @njfatigue The website’s fantastic. Great work!

3/ "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"

@FranceyME @TomKindlon @elizansell Yes we’re in the process of getting notjustfatigue.org back up soon. It recently went out. So sorry about that

@TomKindlon @njfatigue @elizansell Great initiative. But I was really hoping to see what was on the Just Not Fatigue website, but it says, “This deployment is temporarily paused.”

Nice to read this piece on the background to @njfatigue : "In Her Own Words: Elizabeth Ansell @elizansell documents economic impact of chronic fatigue syndrome" bizjournals.com/bizwomen/news/… I can relate to needing to prioritise about what I spent my energy on #MEcfs #CFS 1/

2/ "Building this organization while managing severe energy limitations forced me to become ruthlessly strategic aboutf resource allocation. Every email, meeting, & project had to justify its ROI [Return on Investment] because overexertion could set me back weeks." #PwME #MEcfs

The NIH 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 roadmap for biomarkers, treatments & clinical trials. #MEAction partnered w/ @njfatigue to secure this support. meaction.net/post/senate-te…

Today in BizWomen, our founder describes her journey with ME/CFS and her decision to start #NotJustFatigue. She writes that they “operates as a lean, high-impact organization that proves mission-driven businesses can drive systemic change. Our website reaches hundreds of thousands globally, our documentary series is a popular resource amongst the ME/CFS community, and we’ve built partnerships spanning from researchers to policymakers. We’ve evolved from a solo project into a recognized voice reshaping how society understands and invests in complex diseases”. Link in stories to read. This is #NotJustFatigue. #mecfs #pwme #myalgice bizjournals.com/nashville/bizw…

CRITICAL CONGRESSIONAL UPDATE Big step forward for ME/CFS: the L-HHS bill has passed, sending it to the President’s desk for signature. This bill contains the strongest language for ME/CFS in recent years, if ever. At #NotJustFatigue, we’ve been advocating for this for almost two years. It directs NIH to come back within 180 days with a detailed plan to implement the ME/CFS Research Roadmap. This is a huge step toward real progress—Congress is asking NIH to spell out how it will move forward on biomarkers, diagnostic tools, and clinical trials so patients can finally see a path toward treatments. The bill also calls for Long COVID research at NIH and ARPA-H to better include people with ME/CFS, PEM, and POTS, helping ensure patients aren't left out of the search for answers.

While the language we’ve advocated for surrounding ME/CFS being in the Long COVID Recover Initiative, and the ME/CFS Research Roadmap implementation was not included in this joint explanatory statement, it doesn’t need to restate our ME/CFS paragraphs for them to count. It explicitly says Senate Report 119-55 carries the same weight and should be complied with unless the joint statement specifically overrides it. It doesn’t override our ME/CFS provisions. So the Roadmap direction and the Long COVID-related language we secured in the Senate remain operative guidance as the package heads to passage and signature. #notjustfatigue #mecfs #pwme #longcovid #myalgicE

Excited that our founder @elizansell had an op-ed posted in the @CTMirror about #MECFS and the importance of advancing the ME/CFS Research Roadmap. Here at @njfatigue we’ve been meeting with congressional staffers on behalf of #pwme this entire year to secure appropriations language for the Roadmap ctmirror.org/2025/12/24/was…

Have you heard of ME/CFS? It affects at least 3.3 million Americans and everyone is at risk.  There are no FDA approved treatments, despite studies showing it has one of the worst quality of life out of any disease state. The science is ready. The funding isn’t.  Link in bio or visit notjustfatigue.org to learn more #notjustfatigue #mecfs #pwme #longcovid #myalgice

The first time someone didn’t believe me about my symptoms and I experienced symptomsplaining I was 21. It certainly wasn’t the last. It continues to be one of the most painful experiences with #mecfs and #chronicillness

To whoever posted this, from the bottom of my heart I thank you.

Have you heard of symptomsplaining? It’s the everyday dismissal and second-guessing of chronic illness symptoms—by doctors, employers, loved ones, and society at large. Many people with chronic illnesses experience this, including people with #MECFS #chronicillness #chronicillnesslife #chronicillnesscommunity #chronicillnessawareness #chronicillnesssupport #mecfs #notjustfatigue #pwME #LongCovid