Nice to read this piece on the background to #NotJustFatigue :
"In Her Own Words: Elizabeth Ansell documents economic impact of chronic fatigue syndrome"
https://www.bizjournals.com/bizwomen/news/latest-news/2026/02/in-her-own-words-elizabeth-ansell.html
I can relate to needing to prioritise about what I spent my energy on
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
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The #NotJustFatigue group has posted a recording of their September 25 livestream event.
#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).
Policy asks:
- Restore funding for Congressionally Directed Medical Research Program (CDMRP) & protect ME/CFS as a topic area
- Protect & restore the CDC’s Chronic Fatigue Syndrome Program
- Fund the NIH’s ME/CFS Research Roadmap (in collaboration with #MEAction and #NotJustFatigue)
- Support 10-year follow-up to the 2015 IOM/NASEM report
- Ensure ME/CFS is included in NIH restructuring discussions
Details:
https://solvecfs.org/wp-content/uploads/2025/07/Congressional_Briefing_061625Final.pdf
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I have such a deep appreciation for everyone who tries to show what #MECFS is like. The pairing of portraits and quotes on #NotJustFatigue are powerful:
https://www.notjustfatigue.org/present
Accessibility warning: website’s home page contains strobing graphics (the linked page does not)
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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. Please do check out the website for her non-profit #Notjustfatigue notjustfatigue.org
@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
How do we find a cure for #MECFS? Stop the lip service and get the government to fund clinical trials for the disease. It’s time to sound the alarm on this health crisis. This is the tenth and final video in a ten part video series by #NotJustFatigue
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
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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. Please do check out the website for her non-profit #Notjustfatigue notjustfatigue.org
Living in a society that fails to acknowledge the pain and severity of ME/CFS is challenging. Friends and family might not understand the disease, and watching peers continue on with their lives, while the disease takes its toll, can be torturous. This is the ninth video in a ten part video series by #NotJustFatigue
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
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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
http://notjustfatigue.org
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@mecfs
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 work, and 25% are completely bed-bound or home-bound with a quality of life comparable to that of congestive heart failure. Yet, there are no approved treatments, biomarkers, or diagnostic tests. In fact, there are still doctors who do not believe it’s “real”.
Tom Kindlon
ahimsa
Nyx Mir