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"But you don't look sick." New Medicaid rules deepen stigma against people with ME and Long COVID. We're fighting back.
#MEAction has submitted its official public comment to the Centers for Medicare and Medicaid Services (CMS) about their new Medicaid work requirements regulations. There are just a few more days for you to submit your own public comment before the deadline at 11:59pm EST on Friday, July 31st. You don’t need to be a policy expert to make your voice heard. Use our easy template to share your story. Please support our work to help us continue the fight to recognize ME and Long C
2 days ago3 min read
A Week of Wins: The Roadmap. Congress. The Surgeon General.
This has been a remarkable month for #MEAction and I wanted to share the news directly with you.We are closer than ever to getting the ME/CFS Research Roadmap funded.Building on the Congressional relationships we developed in May through our partnership with #NotJustFatigue, #MEAction met with six offices of members of the Labor-HHS Appropriations Subcommittee over the last two weeks to request $50 million in dedicated funding for the ME/CFS Research Roadmap. We have received
Jul 232 min read
Six Months In: Here Is What We Have Built Together
In just six months, #MEAction has taken on some of the biggest issues facing people with ME and Long COVID. A small, dedicated staff, an extraordinary group of volunteers, and generous donors like you have gotten us here. I want to take a moment to tell you what we have accomplished together, because celebrating our collective work is important. We Showed Up Around the World This year, the #MillionsMissing campaign was amplified globally. From Brazil to France, the UK to Mex
Jun 264 min read
#MEAction and Mayo Clinic Researchers Launch Initiative to Transform Emergency Department Care for People with ME/CFS and Long COVID
Funded by the Whittemore Peterson Institute (WPI) and Mayo Clinic, the project will develop the first nationally applicable clinical guidelines for emergency department care of ME/CFS and Long COVID patients
Jun 233 min read
Frail and Furious: 10 Things You Need to Know About New Changes to the Medicaid Program
People with ME and Long Covid should be exempt from work requirements, period. Join our fight.
Jun 183 min read
Severe ME Artists Project 2026 — Call for Entries!
Submit your work and join us for this year's Severe ME Artists Project!
Jun 184 min read
We’re furious: Last-minute changes to defining medical frailty
Medicaid work requirements exemptions are being restricted
Jun 43 min read
Our Community Needs Urgent Support
A $44,000 grant is waiting. Help us unlock it.
May 212 min read
4,000 Voices Heard by HHS. Here's What Comes Next.
Nearly 4,000 of you signed our letter to Secretary Kennedy calling on HHS to protect Medicaid access for people with ME and Long COVID.
May 202 min read
Big News: $15K Matching Grant for Emergency Department Project
Give today and your donation will be matched up to $15K!
Apr 281 min read
#MEAction Sends Letter to Dr. OZ Urging for Medicaid Protection
Join our fight to protect Medicaid for our community!
Apr 282 min read
#MEAction + Mayo Algorithm’s Effect on ME/CFS Care
We have a new research paper out, and it marks an important milestone in a collaboration that set out to improve care for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The paper is co-first-authored by Jaime Seltzer, Scientific Director at #MEAction, and Dr. Stephanie Grach, an Assistant Professor of Medicine at Mayo Clinic Rochester, and a clinician-researcher specializing in ME/CFS care.Through a small grant from the Society to Improve Diagnosis i
Apr 213 min read
#MEAction to Meet with NIH Director during #MillionsMissing Week
#MEAction and NIH Director to Discuss Funding for ME/CFS Research Roadmap
Apr 142 min read
#MEAction Sends Letter to 42 States Urging Recognition of ME/CFS and Long COVID as Serious Medical Conditions
#MEAction is fighting to protect your Medicaid access. We’re taking action in 42 states and at the federal level to ensure ME/CFS and Long COVID are recognized and protected.
Mar 132 min read
#MEAction Sends Joint Letter Asking Senate to Appropriate $50 million to ME/CFS Research
We have NEWS to share about funding for the ME/CFS Research Roadmap - the NIH’s most comprehensive, strategic plan for ME/CFS research to-date.
Mar 102 min read
#MEAction Partners with Solve for Advocacy Week 2026
This year’s Advocacy Week will focus on medical education.
Mar 32 min read
#MEAction Testifies in Support of Maryland HB 27 to Advance Long COVID Research
#MEAction joined a Maryland bill hearing to support House Bill 27 (HB 27), a proposal that would create a Maryland Long COVID Research Fund and establish a Long COVID Innovation Grant and Loan Program through the Maryland Technology Development Corporation (TEDCO).
Feb 192 min read
Why We Launched an ICE campaign
Where we spend money reflects what we value. From ME research funding to Medicaid cuts, here’s why we’re speaking out, and how you can help.
Feb 93 min read
Guiding Minnesotans Living with Long COVID & ME/CFS to Secure In-Home Help
Pilot program offers free support for Minnesotans with energy-limiting illness
Sep 3, 20252 min read
CANARY CORPS – Alison's Story
Have you registered yet to join us this Wednesday, December 6th at 4pm ET / 1pm PT for a community presentation introducing the Canary Corps program?Ahead of Wednesday’s event we wanted to share with you Alison’s story. Alison Sbrana will be co-presenting this event, and much of the design of Canary Corps has been shaped by both her professional and lived experience. Her story is a sneak peek of what’s gone into the making of Canary Corps.The purpose of Wednesday’s event is t
Dec 4, 20234 min read
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