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meactnet.bsky.social
#MEAction's next #caregiver support call is Sept. 19 at 1:30 pm ET - 3:30 pm ET.

We welcome caregivers of people w/ chronic diseases such as #MyalgicEncephalomyelitis (ME), #LongCOVID, #MCAS, etc!

To join the calls, please email caregiver@meaction.net at we will get you set up!
Two hands (one set of hands is brown and the single hand they are clasping is deep brown) gently clasped together symbolizing support. Text: ME caregivers support call 3rd Saturday of the month 1:30 to 3:30 pm ET. For caregivers of people with myalgic encephalomyelitis (ME), Long COVID, and associated conditions. https://www.meaction.net/event-list
September 17, 2026 at 12:00 AM
juliametraux.bsky.social
I'd look on MEAction's site.
September 16, 2026 at 12:35 AM
meactnet.bsky.social
It’s #MedicaidMonday, & we have an important update!

CMS announced that states may use a “tier system” to determine which Medicaid applicants qualify for the medical frailty exemption from new community engagement requirements.
MEAction staff spoke to @statnews.com: www.statnews.com/2026/09/11/m...
Illustration of two cliffs labeled 2027 and 2028 symbolizing Medicaid coverage loss risks, with MEAction's fight to prevent community impact. Text: "We're looking at two cliffs." MEAction Campaigns Director Ben HsuBorger told STAT. There are two major points when people may lose their Medicaid coverage in the next 2 years. MEAction is fighting to keep our community from falling off either cliff!
September 14, 2026 at 11:05 PM
meactnet.bsky.social
Starting soon! Please note it will be recorded for those unable to attend!

MEAction's Scientific Director Jaime Seltzer @exceedhergrasp1.bsky.social is attending as she has been the previous two days as well.

Take care all!

#MyalgicEncephalomyelitis #MECFS
openmedf.bsky.social Open Medicine Foundation (OMF) @openmedf.bsky.social · 19d
From Dr. Ronald W. Davis: "I'm excited to announce our lineup of speakers for our upcoming Community Symposium on September 11! It will be recorded for those who cannot attend."

Register here: https://ow.ly/EtaX50ZLXkS
Schedule for Stanford Medicine's ME/CFS Molecular Basis Symposium on September 11, 2026, listing speakers and topics from 8:00 am to 4:30 pm.
September 11, 2026 at 2:44 PM
meaction.net.web.brid.gy
#MEAction Launches Research Program for Young Scholars
Graduate researchers at Canadian universities will lead studies using #MEAction’s dataset.
www.meaction.net
September 11, 2026 at 3:02 AM
meactnet.bsky.social
You are invited the the Severe ME Artists Project Gallery! Help spread the word! Share your impressions online!

Artists who participated feel free to share your works and we will do our best to repost. Please tag us!
www.meaction.net/severe-me-ar...

#MyalgicEncephalomyelitis #SevereMEAwareness
Invitation to MEACTION's Severe ME Artists Project 2026 virtual gallery featuring diverse art forms and a QR code for access. A velvet rope like you might find at an artists gallery is under framed symbols for writing, photography, painting, and video. Text: We invite you to tour the virtual gallery with many types of art - written works, photography, painting, videos, and more. Thank you to all with severe ME who submitted work.
August 19, 2026 at 7:02 PM
meactnet.bsky.social
#MEAction's next caregiver support call is this Saturday Aug. 15th at 1:30 pm ET. https://ow.ly/vyWN50ZyFm6

We welcome caregivers of people with myalgic encephalomyelitis (ME), Long COVID, and associated conditions.

To join the calls, please email caregiver@meaction.net!
Two hands (one set of hands is brown and the single hand they are clasping is deep brown) gently clasped together symbolizing support. Text: ME caregivers support call 3rd Saturday of the month 1:30 to 3:30 pm ET. For caregivers of people with myalgic encephalomyelitis (ME), Long COVID, and associated conditions. https://www.meaction.net/event-list
August 12, 2026 at 1:01 PM
meactnet.bsky.social
CoRy the Cat here this Medicaid Monday on how to submit a public comment to CMS using MEAction's handy template. Deadline is July 31st, 11:59 pm ET, so be sure to get those in before the window closes! https://ow.ly/NSTX50ZsoLb

A huge thank you to volunteer CoRy Wysz 💤 for walking us through it!
July 27, 2026 at 4:02 PM
meactnet.bsky.social
MEAction's next caregiver support call is this Saturday July 18th at 1:30 pm ET to 3:30 pm ET. https://www.meaction.net/event-details/caregiver-support-call-2026-07-18-13-30-1

All caregivers of people with ME, Long COVID, and associated conditions are welcome.

#caregiver #PwME #PwLC #Carer
Two hands (one set of hands is brown and the single hand they are clasping is deep brown) gently clasped together symbolizing support. Text: ME caregivers support call 3rd Saturday of the month 1:30 to 3:30 pm ET. For caregivers of people with myalgic encephalomyelitis (ME), Long COVID, and associated conditions. https://www.meaction.net/event-list
July 15, 2026 at 12:00 AM
mecfssd.bsky.social
Scott Hugo, 25+ patient advocates & @meactnet.bsky.social filed an ethics complaint over WIRED's Long COVID article. Learn why the Long COVID & ME/CFS communities are concerned, read the complaint & sign the petition:
www.mecfssandiego.com/mecfs-advoca...
Advocacy alert about WIRED's Long COVID article, urging support for Scott Hugo and #MEAction's ethics complaint with calls to read the complaint and sign a petition.
July 14, 2026 at 7:12 AM
bhanlon15.bsky.social
"Linda Pozen, who leads #MEAction’s Minnesota Home Help Navigation program, has found a similar culture of solidarity where they live in Minneapolis. “That is my neighbor. You don’t get to come for them,” they said."
July 7, 2026 at 6:14 PM
katieklocksin.bsky.social
There’s a reason people call this the #GreatestMEdicalScandal of the 21st century.

Here’s the best place to start if you or someone you know is more exhausted than makes sense.

www.meaction.net/pacing-and-m...
PACING & MANAGEMENT GUIDES | #MEAction
Find #MEAction's original Pacing Guide and Pediatric Pacing and Management Guide for ME/CFS and Long COVID, with translations.
www.meaction.net
June 23, 2026 at 6:37 AM
mecfssd.bsky.social
@meactnet.bsky.social Advocacy Opportunity: CMS’s new Medicaid work requirement rule could make it harder for people with ME, Long COVID and other IACCs to qualify for exemptions. Submit a public comment by July 31 using MEAction’s template and instructions: ow.ly/r2vs50ZcwjN
Public Template for CMS public comment - Frail + Furious June 2026
Frail and Furious Community Template for Public Comments to CMS re their Interim Final Rule on Medicaid work requirements Call to action Public comment - template Instructions for submission Backgro...
ow.ly
June 23, 2026 at 12:17 AM
meactnet.bsky.social
Welcome to Medicaid Mondays! MEAction is going to be sharing important information about Medicaid, especially focusing on the new work requirements on Mondays this summer.

Our Frail and Furious campaign is happening all year!

Huge thanks to @corywysz.bsky.social!
youtube.com/shorts/6olhd...
CoRy the Cat kicks off MEAction's Medicaid Mondays! #FrailAndFurious
YouTube video by The ME Action Network
youtube.com
June 15, 2026 at 6:47 PM
meactnet.bsky.social
“Self-Compassion as a Helpful Response to Your Loved One’s Suffering” is the focus for #MEAction's partner caregiver meeting on June 7 12 pm PT. ALL caregivers welcome.

Charley Kakel will offer a talk & there will be breakout rooms.

Email kim@caregiverwisdom.net if you’d like to join.

#caregiver
Graphic of person on a couch with laptop and screen they are looking at showing behind them. That screen has four people showing as if on a virtual call. Text: #MEAction Partner Caregiver Support Call 1st Sunday of every month 12 pm PT/ 3 pm ET
June 4, 2026 at 4:27 PM
spoonieresources.bsky.social
New to ME/Chronic Fatigue Syndrome? MEAction's wiki page on Post-Exertional Malaise gives a good run-down of the basics (with citations!) and then goes in-depth to cover everything you probably ever wanted to know on the topic...
me-pedia.org/wiki/Post-ex...
Post-exertional malaise
me-pedia.org
May 27, 2026 at 1:14 PM
meactnet.bsky.social
REMINDER! Deadline to apply to MEAction's writing workshops offered for our community in collaboration with the Writers Guild Initiative is tomorrow - May 22 by midnight eastern. Apply here: https://ow.ly/Xklf50Z2Rgg

#pwME #MECFS #MyalgicEncephalomyelitis #WritingCommunity
Reminder for writing workshops with Writers Guild Initiative on June 6th, 13th, and 20th; apply by May 22, 2026, midnight ET.
May 21, 2026 at 8:15 PM
mecfssd.bsky.social
The #MEAction Network Advocacy Letter: HHS is expected to finalize its guidance to states on "medically frail" exemptions by June 1st. Sign MEAction's letter to HHS. www.meaction.net/savemedicaid
SAVE MEDICAID | #MEAction
ME/CFS and Long COVID are at high risk of being excluded from the “medically frail”exemption list for Medicaid work requirements – which means we are at high risk of losing our health insurance.
www.meaction.net
May 12, 2026 at 9:12 PM
meactnet.bsky.social
Join us TOMORROW for an Ask Me Anything about Medicaid with MEAction's US Advocacy Director, Ben HsuBorger - May 5th at 3 pm ET live on Instagram.

Email one to therese@meaction.net, or show up live and ask there.

#pwME #MECFS #Disability #Medicaid #MillionsMissing #FrailAndFurious
Promotional graphic inviting questions about Medicaid with MEAction's Ben HsuBorger, live on Instagram May 5 at 3 pm ET. Photo of Ben: White male with brown hair and beard wearing glasses and dark polo speaks in front of a computer while sitting in bed. Text: Ask Me anything about Medicaid. Drop your question in the comments! May 5 3 pm ET
May 4, 2026 at 9:05 PM
meactnet.bsky.social
Ask Me Anything (about Medicaid) with our Advocacy Director Ben HsuBorger is coming up on Tuesday, May 5th at 3 p.m. ET as part of our #FrailAndFurious campaign.
We want your questions! Email your question to therese@meaction.net or ask live on #MEAction's Instagram.
#Medicaid #MECFS #disability
Man with headset gestures while speaking in front of laptop during Medicaid-focused AMA event announcement. Detailed description: Ben HsuBorger (white man with dark hair and beard with a gray streak wearing glasses, headphones, black polo, and gray pants) sits on a bed with a computer on a desk in front of him. Text above and to the side: Ask Me Anything: Medicaid edition. With MEAction's Ben HusBorger May 5th 3 pm ET. on MEAction's Instagram.
May 2, 2026 at 7:50 PM
meactnet.bsky.social
Ask Me Anything (about Medicaid) with our Advocacy Director Ben HsuBorger is coming up on Tuesday, May 5th at 3 p.m. ET as part of our #FrailAndFurious campaign.
We want your questions! Email your question to therese@meaction.net or ask live on #MEAction's Instagram.
#Medicaid #MECFS #disability
Man with headset gestures while speaking in front of laptop during Medicaid-focused AMA event announcement. Detailed description: Ben HsuBorger (white man with dark hair and beard with a gray streak wearing glasses, headphones, black polo, and gray pants) sits on a bed with a computer on a desk in front of him. Text above and to the side: Ask Me Anything: Medicaid edition. With MEAction's Ben HusBorger May 5th 3 pm ET. on MEAction's Instagram.
April 29, 2026 at 8:01 PM
meactnet.bsky.social
MEAction’s Shalida Dobbins shares that this #MillionsMissing we are #FrailAndFurious. We are fighting to protect Medicaid access for people with #MECFS, #LongCOVID, & other disabilities.

Join us at millionsmissing.org!

#pwME #disability #medicaid #ProtectMedicaid @shalidaask.bsky.social
April 28, 2026 at 8:14 PM
exceedhergrasp1.bsky.social
We're eager to get to work!

You can donate directly to support the study at #MEAction's fundraiser here:

millionsmissing.funraise.org/fundraiser/m...
#MillionsMissing 2026
millionsmissing.funraise.org
April 28, 2026 at 1:49 PM
meactnet.bsky.social
Laurie Jones, MEAction’s executive director, shares what is truly at the heart of this year’s #MillionsMissing.

This year, everything we do is in service of one goal: getting ME recognized as a serious and complex medical condition.

www.meaction.net/millionsmiss...

#pwME #MECFS #LongCovid
April 23, 2026 at 6:47 PM
meactnet.bsky.social
#MEAction’s Scientific Director, Jaime Seltzer, is co-first author for this paper along with Dr. Stephanie Grach, an Assistant Professor of Medicine at Mayo Clinic Rochester and longtime collaborator— congrats to them, and to the whole team!
April 21, 2026 at 7:56 PM