Latest posts tagged with #MEAction on Bluesky
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
NHS Lothian logo in blue on a white background.
#MEAction Scotland volunteers recently met with staff from NHS Lothian to discuss its guidance for GPs who are considering referring patients to the ME/CFS clinic at Astley Ainslie Hospital.
A photo montage showing M E Action volunteers meeting various MSPs, MPs and prospective parliamentary candidates at the Scottish Labour Party spring conference.
Another weekend, another party conference.
This time it was the Scottish Labour Party Conference, a single day conference which proved both busy and fruitful for #MEAction Scotland volunteers, Janet and Judith.
#MyalgicEncephalomyelitis #MyalgicE #HealthEquality
A photo montage showing M E Action volunteers meeting various MSPs, MPs and prospective parliamentary candidates at the Scottish Labour Party spring conference.
Another weekend, another party conference.
This time it was the Scottish Labour Party Conference, a single day conference which proved both busy and fruitful for #MEAction Scotland volunteers, Janet and Judith.
#MyalgicEncephalomyelitis #MyalgicE #HealthEquality
#MEAction Partner Caregivers Support Group invites caregivers who are spouses, partners etc of people with ME/CFS or Long COVID (& associated conditions) to connect, share & support each other via zoom - first Sunday of the month.
1 Mar @ 8pm GMT Contact kim@caregiverwisdom.net
tinyurl.com/5xpnd4wb
#MEAction Scotland has been contacted by the Long Covid service within NHS Ayrshire & Arran. They are asking the ME/CFS community to complete a short survey to help them design the new service they’re setting up with their share of the £4.5 million announced by the Scottish Government last autumn.
A white man and a white woman, looking at the camera and smiling. The woman is wearing an M E Action t-shirt, lanyard and ID badge.
A white man and a white woman, looking at the camera and smiling. The woman is wearing an M E Action t-shirt, lanyard and ID badge.
A white man and a white woman, looking at the camera and smiling. The woman is wearing an M E Action t-shirt, lanyard and ID badge.
Three white women, looking at the camera and smiling. The women on the far left and far right of the picture are wearing M E Action t-shirts, lanyards and ID badges.
#MEAction Scotland volunteers had a busy morning at the @scottories.bsky.social Spring Party Conference. They spoke to a variety of delegates including prospective parliamentary candidates, councillors, MSPs & an MP @brianwhittle.bsky.social @suewebbermsp.bsky.social
@tesswhitemsp.bsky.social
A white man and a white woman, looking at the camera and smiling. The woman is wearing an M E Action t-shirt, lanyard and ID badge.
A white man and a white woman, looking at the camera and smiling. The woman is wearing an M E Action t-shirt, lanyard and ID badge.
A white man and a white woman, looking at the camera and smiling. The woman is wearing an M E Action t-shirt, lanyard and ID badge.
Three white women, looking at the camera and smiling. The women on the far left and far right of the picture are wearing M E Action t-shirts, lanyards and ID badges.
#MEAction Scotland volunteers had a busy morning at the @scottories.bsky.social Spring Party Conference. They spoke to a variety of delegates including prospective parliamentary candidates, councillors, MSPs & an MP @brianwhittle.bsky.social @suewebbermsp.bsky.social
@tesswhitemsp.bsky.social
We have 2 new webinars available. The one listed above and Top 10 Lessons From 20 Years of Caregiving with Kim Moy. We also have a new document with advice from caregivers who are also sick.
#MEAction offers two free caregiver calls each month, as well as a Facebook support group.
#Caregiver
Three white women, looking at the camera and smiling. Two of the women (far left and far right) are wearing M E Action t-shirts and lanyards.
Two white women, both wearing glasses, looking at the camera and smiling. The woman in the right is wearing an M E Action t-shirt and lanyard.
A white man (left) and a white woman (right) looking at the camera and smiling. The woman is wearing an M E Action t-shirt and a lanyard.
A productive first day for #MEAction Scotland's volunteers at the Scottish Liberal Democrats Spring Conference.
Today we have engaged with a range of prospective candidates as well as MPs and MSPs @mpsusanmurray.bsky.social @cajardinemp.bsky.social and @jamiegreeneuk.bsky.social
#MyalgicE
Three white women, looking at the camera and smiling. Two of the women (far left and far right) are wearing M E Action t-shirts and lanyards.
Two white women, both wearing glasses, looking at the camera and smiling. The woman in the right is wearing an M E Action t-shirt and lanyard.
A white man (left) and a white woman (right) looking at the camera and smiling. The woman is wearing an M E Action t-shirt and a lanyard.
A productive first day for #MEAction Scotland's volunteers at the Scottish Liberal Democrats Spring Conference.
Today we have engaged with a range of prospective candidates as well as MPs and MSPs @mpsusanmurray.bsky.social @cajardinemp.bsky.social and @jamiegreeneuk.bsky.social
#MyalgicE
Two photos and text. Top photo: 5 people sit at a long desk ready to testify. The only one identified in description is Bridget Collins (White person with hair pulled back wearing a respirator mask and blue blazer) Bottom photo: Jaime Seltzer (white woman with hair pulled up wearing glasses, headphones, shirt and blazer smiles lightly at camera) Text: #MEAction testifies in support of Maryland Bill to Advance Long COVID research. Read more at meaction.net. Each photo has a small description underneath.
Last week, #MEAction joined a Maryland bill hearing to support House Bill 27, a proposal that would create the Maryland Long COVID Research Fund & establish a Long COVID Innovation Grant & Loan Program through the Maryland Technology Development Corporation (TEDCO).
www.meaction.net/post/meactio...
#MEAction logo Advice for Caregivers from Caregivers – Who are Sick Themselves #MEAction’s advocate, Denise Lopez-Majano, posed questions to caregivers, many of whom live with myalgic encephalomyelitis (ME) themselves, to collect their wisdom, advice and experience. Denise is a caregiver for her two adult sons with severe ME and has been facilitating #MEAction’s caregiver calls for several years. Join #MEAction’s caregivers group here.
🧵
"Advice for Caregivers from Caregivers – Who are Sick Themselves" from @meactnet.bsky.social (5 pages)
www.meaction.net/_files/ugd/b...
#MEAction Caregivers' Support Group www.facebook.com/groups/meact...
#Caregiver #Caregivers #Caring #MEcfs #CFS #PwME
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Facebook support group: #MEAction Seniors Connect. People with ME who have been sick for decades and are aging, share information and support each other.
tinyurl.com/58rvj4xb
new podcast episode: Broken glass and other heartaches
open.spotify.com/show/0oNLwzI... #canpoli #disability #MyalgicE #pwME #MECFS #MEAction
New webinars for caregivers available from #MEAction at ow.ly/70Gp50YeANv
#ME-CFS #longCOVID #chronicillness #disability
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 letter to the NIH director 4a6ff496-ce8b-4c52-93d2-15f9b79bd151.usrfiles.com/ugd/4a6ff4_8... asking for $50M of discretionary funding
actionnetwork.org/letters/ice-...
#meaction #mecfs #stopice #fundhealthcare #icemakesmesick #disabilityjustice
