🚨 Reminder: ME/CFS Advocacy Week Starts Monday (March 23-27)
This is a joint campaign by #MEAction and Solve ME to work with the systems that shape what US medical providers learn about ME/CFS and Long Covid.
Volunteers still needed! Register here (Google form):
https://docs.google.com/forms/d/e/1FAIpQLSdR4eWbC6OWn1LAFAJhFg_CFz2xOaLYTPzj6kjSDELhAu0fdg/viewform
Participant toolkit:
https://www.canva.com/design/DAHDA3p0_NY/oTfLyW-lmGZIlbDdQfqmoA/view?utm_content=DAHDA3p0_NY
In case it was not clear, they need volunteers - please sign up if you can!
I just signed up myself.
From the sign-up form:
"Throughout the week, participants will receive clear daily action steps, templates, and guidance. You may participate at your own pace, and all live sessions will be recorded.
We’re grateful you’re joining us. If you have any questions please email us at [email protected] "
https://docs.google.com/forms/d/e/1FAIpQLSdR4eWbC6OWn1LAFAJhFg_CFz2xOaLYTPzj6kjSDELhAu0fdg/viewform
This year, Solve M.E. and #MEAction are partnering together to move ME/CFS from “optional knowledge” to “standardized knowledge” in clinical care. We will be engaging state-level patient safety, regulatory, and public health officials about the lack of standardized education and training on IACCs (such as ME/CFS and Long COVID) for clinicians. This lack of training is creating a medical gap in which patients are experiencing more debility and prolonged care interventions, which then leads to poor patient outcomes, increased disability cases, and higher unemployment rates. Throughout the week, participants will receive clear daily action steps, templates, and guidance. You may participate at your own pace, and all live sessions will be recorded. We’re grateful you’re joining us. If you have any questions please email us at [email protected]
Hello to all the ME/CFS and Long Covid activists out there 👋
Solve ME and #MEAction are joining forces to work on a medical education initiative for this year's Advocacy Week, March 23-27.
More details:
https://solvecfs.org/registration-open-for-me-cfs-advocacy-week-2026/
Registration link (Google docs form):
https://docs.google.com/forms/d/e/1FAIpQLSdR4eWbC6OWn1LAFAJhFg_CFz2xOaLYTPzj6kjSDELhAu0fdg/viewform
"New Catalyst Awards to Accelerate ME/CFS and Long Covid Breakthroughs"
https://solvecfs.org/february-2026-catalyst-awards/
“Solve M.E. is committed to putting patients at the center of scientific progress. These Catalyst Award-winning studies not only push the boundaries of ME/CFS research but also ensure that patient voices guide every step. We believe these projects will bring us closer to answers, hope, and better lives for people affected by ME/CFS and Long Covid."
Follow the clues. Explore the map. Uncover the hidden location. DM your solution — can you be the first to solve this MicroHunt?
Share it with a friend, an acquaintance, a work colleague, or a lover who can help crack it.
#bookhouse #bookhouseUK #MicroHunt #puzzle #dailypuzzle #puzzlebook #dailychallenge #treasurehunt #book #library #solveme #maplovers #booklovers #riddle #brainteaser #mystery #unitedkingdom
@IrishMECFSAssociation Wow, many thanks to the Irish ME/CFS Association for this donation! ❤️
I'm not staff, just a volunteer, but I think Solve ME does good work. For example, their yearly advocacy week sets up hundreds of meetings with US senators and US representatives to lobby for legislation that will help ME/CFS and Long Covid patients.
Video from Solve ME, about 13 minutes long.
"Hollis Mickey on Pacing with Severe M.E."
https://www.youtube.com/watch?v=5LUox41bP94
"Often we say, 'I crashed myself,' or feel frustrated or blame ourselves for exceeding a threshold. I am the biggest culprit of this. But crashing is not always predictable"
"My body is having an unreasonable reaction to a reasonable action."
Transcript:
https://solvecfs.org/wp-content/uploads/2025/08/Pacing-With-Severe-M.E.pdf
The Summer 2025 edition of Solve ME's journal, The Chronicle, is now available.
Summary here:
https://solvecfs.org/read-the-summer-2025-edition-of-the-chronicle/
Direct link to the summer 2025 issue (PDF) here:
https://solvecfs.org/wp-content/uploads/2025/07/Summer2025ChronicleFinal.pdf
We're excited to share the newest edition of our flagship journal, The Chronicle. Inside, you'll find our overview of noteworthy research studies from the last quarter, including: A Genetic Risk Score for ME/CFS, Identifying Soluble Biomarkers That Associate with Distinct Manifestations of Long Covid, and more.
"Power, Progress, and Patient-Led Change"
An overiew of Advocacy Week 2025 from Solve ME:
https://solvecfs.org/advocacy-week-2025-power-progress-and-patient-led-change/
"In a single week, the Solve M.E. community took part in 187 congressional meetings—sharing powerful personal stories, urgent data, and clear policy goals with Senate and House offices."
1/n
#USPol #MEcfs #LongCovid #POTS #Congress #Senate #Advocacy #SolveME
New video from Solve ME, a recording of the EmPower M.E. event on June 27:
Pacing: Power In Slowing Down
(about one hour long)
https://www.youtube.com/watch?v=to9xPPuRM1o
"Pacing is one of the most talked-about — but often misunderstood — tools in chronic illness management. In this informative session, we’ll break down what pacing really means, why it works, and how it works — so no family has to learn the hard way."
#MEcfs #LongCovid #PwME #PEM #SevereME #StopRestPace #SolveME
ahimsa
Bookhouse Institute