🚨 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
Looking for a way to help on Long Covid Awareness Day?
Solve ME & #MEAction are looking for volunteers for Advocacy Week 2026 (March 23-27)
US doctors often have little to no formal education about ME/CFS, Long Covid, or other infection-associated chronic conditions (IACC)
So the focus this year is on medical education. Details:
https://solvecfs.org/registration-open-for-me-cfs-advocacy-week-2026/
Registration:
https://docs.google.com/forms/d/e/1FAIpQLSdR4eWbC6OWn1LAFAJhFg_CFz2xOaLYTPzj6kjSDELhAu0fdg/viewform
If you volunteer, thank you! ❤️
This year, we'll foster relationships with state-level patient safety and medical boards to encourage them to push for inclusion of ME/CFS in medical school curriculum and on national qualifying medical exams.
"Access to clear, trustworthy resources can help people better understand what they or their loved ones may be experiencing and find ways to navigate the road ahead.
To mark Long Covid Awareness Day, we’ve joined forces with #MEAction, Bateman Horne Center, and the Open Medicine Foundation as #UnitedForME.
We’ve gathered a set of resources designed to inform and empower patients, caregivers, and supporters."
2/n
#LongCovidAwarenessDay #LongCovid #PostCovid #CovidIsNotOver
@Themikina @rybson
Here's some info from #MEAction, an advocacy group for both ME/CFS and Long Covid:
https://www.meaction.net/stoprestpace
https://www.meaction.net/long-covid-and-mecfs
Hope this helps!
PS. Long Covid page from the CDC website:
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
@ljwrites I prefer when hashtags are listed at the end. I don't care much about the number as long as they're relevant (not spamming).
When hashtags are at the end the first few are listed and the rest are hidden behind an "and more" link. That reduces clutter. Maybe some folks (crossposting?) don't know about this feature?
The only time I remember using hashtags in the main text nowadays is when it's part of a group's name, eg, #MEAction = an advocacy group for ME/CFS patients.
🧵
"Advice for Caregivers from Caregivers – Who are Sick Themselves" (5 pages)
https://www.meaction.net/_files/ugd/b5886a_8c9ea881a27b4961917e63a6a812f3d9.pdf
#MEAction Caregivers' Support Group https://www.facebook.com/groups/meactioncaregivers/
#Caregiver #Caregivers #Caring #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
1/
From #MEAction:
Join us this coming Friday, Feb. 20th at 3 p.m. EST as we host a virtual book reading and Q&A with MEAction's Shalida Askanazi.
She will be reading from her memoir "That Girl’s in a Wheelchair."
More info:
https://www.meaction.net/event-details/virtual-book-reading-with-shalida-a-askanazi
Zoom registration link:
https://us06web.zoom.us/meeting/register/mav7CNlTQWazRm0DLPg9SQ#/registration
#Disability #Disabled #DisabledAuthor #Wheelchair #Books #Bookstodon #Reading
#MEAction "Congress Tells NIH: Develop Plan to Implement ME/CFS Research Roadmap"
Congress has directed the NIH to develop an implementation plan for the ME/CFS Research Roadmap. Money must still be allocated to fund the roadmap. #MEAction has sent a letter to the NIH director https://4a6ff496-ce8b-4c52-93d2-15f9b79bd151.usrfiles.com/ugd/4a6ff4_807a55e657864f37ad522046a46ca06b.pdf asking for $50 million of discretionary funding.
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
ahimsa
Tom Kindlon