Latest posts tagged with #MEaction on Bluesky
We're getting ready to send the letters from ME/CFS Advocacy Week! Make sure you sign THIS WEEK!
We're asking State Medical Boards to meet with our community & support efforts to get ME/CFS questions on national licensing exams.
Sign: https://ow.ly/vLAK50YzkCb
Solve M.E. #MEAction Network
Myalgic Encephalomyelitis is a fully disabling life changing chronic illness. #MEAction #frailandfurious #mecfs #pwme #disabilityjustice #fundhealthcare
USA - Solve ME and #MEAction Recordings of all the Advocacy Week online sessions are now available. This forum thread also has a post with instructions for how to fill out the Community Letter Sign-On Form. Both patients and allies can sign these letters. Thread
Solve ME and #MEAction: Recordings of all the Advocacy Week online sessions are now available
www.s4me.info/threads/solv...
Screenshot from latest Science for ME weekly update
#MEcfs #PwME
Gift 🎁 link to a piece by Julie Rehmeyer about the 2023 death of her friend Beth Mazur, who was co-founder of the advocacy organization #MEAction, & who died by suicide while visiting Rehmeyer:
www.nytimes.com/2026/04/03/s...
Trigger Warning: www.nytimes.com/2026/04/03/s... Julie Rehmeyer, noted math and science journalist with ME/CFS, reflects on the loss of her friend Beth Mazur, #MEAction cofounder, who chose to end her life after severe illness and honors her suffering, love and impact.
Through a grant from the Society to Improve Diagnosis in Medicine (ImproveDx), #MEAction and Mayo Clinic staff collaborated to produce:
~ A Concise Clinical Review in Mayo Clinic Proceedings with an associated CME
~ A new, public-facing ME/CFS page for Mayo
~ A care process algorithm for ME/CFS 🧵
#MEAction partner caregiver support group (all caregivers welcome) facilitated by Caregiver Wisdom is this Sunday, April 5 at 12 pm PT / 3 pm ET.
Will explore micro-acts of joy without dismissing the challenges of caregiving. Both can exist!
www.meaction.net/event-detail...
#Caregiver
The #MEAction Partner Caregivers Support Group invites caregivers who are spouses, partners etc of ppl with ME/CFS or Long COVID (& associated conditions) to connect, share & support each other via zoom - first Sunday of the month. 5 Apr @ 8pm BST Contact kim@caregiverwisdom.net
tinyurl.com/bdy2zzep
ME/CFS Advocacy Week 2026 Day 5 message thanking supporters and encouraging rest after impactful state and federal advocacy efforts. Text-based graphic with cream background and blue and red text. Day 5 Thank you! Rest up! You helped make sure our community is heard at both the state and federal level this year. That matters — more than we can say. This work continues. Stay connected with Solve M.E. and #MEAction for what comes next.
Thank you to all who participated in ME/CFS Advocacy Week 2026.
You helped make sure our community is heard at both the state & federal level this year. That matters — more than we can say.
This work continues. Stay connected with Solve M.E. & #MEAction Network for what comes next.
Protesters lie on the ground outside the White House holding signs. Text above: #MEAction Protest Guide Available. Text below: Part 1: For people who are planning a protest/activism to include people with ME Part 2: For those planning to attend an in-person protest that have complex chronic illness
REMINDER!
#MEAction has a Protest Guide for those with ME or other energy-limiting chronic disease.
Find it here: https://ow.ly/toH750Yzlhj
#pwME #MECFS #ChronicIllness #protest #spoonie #disability
#MECFS is not consistently recognized, diagnosed, or safely managed!
Join #Solve and #MEAction in asking State Medical Boards to meet and support questions on national medical licensing exams.
Add your name & share: tinyurl.com/StateMedicalBoardForm
#NEISvoid, #MECFS #pwME #LongCOVID #IACCs
#MECFS is not consistently recognized, diagnosed, or safely managed across healthcare settings.
We're asking State Medical Boards to meet with our community & support our efforts to get ME/CFS questions on national licensing exams.
Sign: https://ow.ly/vLAK50YzkCb
Solve M.E. #MEAction Network
Text-based graphic: "Me/CFS Advocacy Week 2025 Federal Advocacy Day ME/CFS has no FDA-approved treatments. Ask your Senators and Representatives to sign onto Dear Colleague letters in support of our community appropriations requests- we need medical research funding."
ME/CFS affects ~9 million Americans. There are no FDA-approved treatments. We need medical research funding to change that.
Today advocates are asking Congress to change that - join us! It takes 5 minutes:
https://ow.ly/2hKo50YySls
#MECFS #MEAwarenessHour
Solve M.E. #MEAction Network
It is ME/CFS Advocacy Week 2026 Day 2. Solve M.E. and MEAction urge writing to state Patient Safety Agency with provided templates and toolkit. Text-based graphic on cream background with blue and red accents. Text: Day 2 Today’s action: write to your state’s Patient Safety Agency. Template and state toolkit provided. Optional Zoom call at 3 pm ET. It's time for infection-associated chronic conditions (IACCs) like ME/CFS and Long COVID to be part of every medical provider's education.
Day 2 of ME/CFS Advocacy Week w/ Solve M.E. & #MEAction Network
Write your state's Patient Safety Agency.
Optional community call - 3 pm ET.
1. Access state guide
2. Write email using template
3. Log in tracker
All links in the quick start guide: https://ow.ly/6ZN350Yycp6
Announcement for ME/CFS Advocacy Week 2026 starting March 23-27 with a virtual kickoff call on March 23 at 12 pm PT/3 pm ET. Register at tinyurl.com/MEActionAdvo2026. Text-based graphic with a megaphone in top corner, text in center, and logos in bottom corners.
ME/CFS Advocacy Week 2026 starts today and it's not too late to join! Solve M.E. & #MEAction Network are building the case to make ME/CFS part of standardized medical education.
Register: https://tinyurl.com/MEActionAdvo2026
Virtual kickoff call today at 12 pm PT/ 3 pm ET!
#MECFS #pwME #MedEd
Blue text on cream background with light blue grid: "ME/CFS Advocacy Week 2026 Participant Toolkit Available!" Small megaphone in one corner and text ?March 23-27" in the other. Below text is image of the toolkit which is a green background with US Capitol dome graphic above the text: "ME/CFS Advocacy Week Participant Toolkit. It's time for ME/CFS to be part of every medical provider's education. March 23-27, 2026" Solve M.E. and MEAction logos are in bottom corners.
Advocacy Week 2026 starts on Monday - March 23rd! Solve M.E. & #MEAction Network partnered to work with the systems that shape what medical providers in America learn!
Register here: https://ow.ly/OvhM50YvA5Y
Check out our NEW Participant Toolkit: https://ow.ly/9uOZ50YvA5Z
#pwME #MECFS
Two photographs of a female M E Action volunteer with two SNP MSPs. The captions beside the photos read Thank you Ben MacPherson, MSP for all your past support and welcome Paul McLennan, MSP our new SNP Champion
#MEAction Scotland thank @BenMacpherson for his tireless support since our launch in 2018. Due to his recent appointment as a Minister, Ben is stepping down as our official parliamentary champion. We look forward to working with our new SNP champion, @PaulMcLennan7
#MyalgicE
To honor #LongCOVIDAwarenessDay, Open Medicine Foundation (OMF) #MEAction Network Solve M.E. & Bateman Horne Center once again joined forces as #UnitedForME. We gathered a set of resources from our orgs to inform & empower:https://bit.ly/3Na4mX4
Teal and gray ribbon symbolizing Long COVID awareness with logos of Bateman Horne Center, Solve M.E., OMF, and #MEAction above text : "Together, we're highlighting Long COVID resources! Long COVID Awareness Day"
To honor #LongCOVIDAwarenessDay, #MEAction Network, Solve M.E., Bateman Horne Center & Open Medicine Foundation (OMF) once again joined forces as #UnitedForME. We gathered a set of resources from our orgs to inform & empower:https://bit.ly/3Na4mX4
#LongCOVID #pwME
Photo montage of various members of the Scottish Parliament and M E Action Scotland volunteers at the Scottish National Party Spring conference.
During a busy day @theSNP Spring conference, #MEAction Scotland engaged with many MSPs, including Cabinet Secretary for Health and Social Care, Neil Gray, Minister for Public Health and Women's Health, @jennimintomsp.bsky.social and First Minister, @johnswinney.bsky.social
#MyalgicE #HealthEquality
Photo montage of various members of the Scottish Parliament and M E Action Scotland volunteers at the Scottish National Party Spring conference.
During a busy day @theSNP Spring conference, #MEAction Scotland engaged with many MSPs, including Cabinet Secretary for Health and Social Care, Neil Gray, Minister for Public Health and Women's Health, @jennimintomsp.bsky.social and First Minister, @johnswinney.bsky.social
#MyalgicE #HealthEquality
Map of the United States with network lines illustrating connection against a textured red background with MEaction logo in corner. Text above: #MEAction Sends Letter to States Urging Recognition of ME/CFS and Long COVID as Serious Medical Conditions."
We have an update to share in our fight to protect Medicaid!
#MEAction has sent a letter to State Medicaid Directors explaining why ME/CFS and Long COVID are serious, complex medical conditions – and should be exempt from the new onerous work requirement.
Letter: ow.ly/UmlA50YsAzf
ME/CFS affects millions but isn't part of standard clinical training. This Advocacy Week (Mar 23–27), Solve M.E. & #MEAction Network will ask patient safety agencies to support our mission to introduce #MECFS questions into qualifying national medical exams.
Sign up: 🔗https://ow.ly/GbOp50YoTVe
Announcement for ME/CFS Advocacy Week 2026 from March 23 to 27 with upward arrows and a megaphone graphic. Megaphone in top corner. Solve M.E. logo and MEAction logo under each arrow.
ICYMI!
#MECFS affects millions but is NOT part of standard clinical training.
Advocacy Week (Mar 23–27), Solve M.E. & #MEAction Network will ask patient safety agencies to support our mission to introduce ME/CFS questions into qualifying national medical exams.
Register: https://ow.ly/Tqet50YoPG7
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.
New podcast ep- pt3: squish squash brick wall
open.spotify.com/show/0oNLwzI... (Note, Silly app isn't generating the link correctly. Takes you to the podcast but not the specific episode. Just scroll to pt3. Le sigh)
#myalgicE #disability #canpoli #chronicpain #meaction
New podcast ep- pt2: squish squash pain meats dreams middle of the night episode
open.spotify.com/show/0oNLwzI...
#myalgicE #disability #canpoli #Canada #meaction
New podcast episode: squish squashed
open.spotify.com/episode/0oxR...
#myalgicE #disability #canpoli #Canada #meaction
Announcement for ME/CFS Advocacy Week 2026 from March 23 to 27 with upward arrows and a megaphone graphic. Megaphone in top corner. Solve M.E. logo and MEAction logo under each arrow.
#MECFS affects millions but is NOT part of standard clinical training.
This Advocacy Week (Mar 23–27), Solve M.E. & #MEAction Network will ask patient safety agencies to support our mission to introduce ME/CFS questions into qualifying national medical exams.
Register: https://ow.ly/Tqet50YoPG7
ME/CFS affects millions but isn't part of standard clinical training. This Advocacy Week (Mar 23–27), Solve M.E. & #MEAction Network will ask patient safety agencies to support our mission to introduce #MECFS questions into qualifying national medical exams.
Sign up:
🔗https://ow.ly/GbOp50YoTVe
