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This Is What We Are Up Against
Fury and hope can coexist. Here’s why we believe this is the year everything changes for people with ME.
2 days ago3 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
4 days ago3 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 Joins National Webinar: Impacts of H.R.1 on Disability Communities
Our year-long campaign to protect Medicaid for people with myalgic encephalomyelitis (ME) and Long COVID continues! We are pleased to share that our Advocacy Director, Ben HsuBorger, will be joining a national webinar to discuss how the H.R.1 funding bill passed by Congress last year (commonly known as the One Big Beautiful Bill) will affect disability communities. The Grassroots Project, which supports disability grassroots advocacy, networking, and leadership development,
Apr 102 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


Spotlight: Black Women and Medical Racism
It's so important that we recognize the struggle of being believed when seeking medical help. Black women are consistently less likely to have their pain taken seriously at appointments. ME/CFS is already difficult to get taken seriously or to receive a proper diagnosis. Being a Black woman even lessens the chances of being diagnosed.
Feb 182 min read


Check Out our 3 New Resources for Caregivers!
Two caregivers share their insights from decades of caregiving for spouse, children, mother, teens and adult children with ME
Feb 122 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


More great news! Telemedicine has been extended!
We know how important this is for you.
Feb 61 min read


Congress Tells NIH: Develop Plan to Implement ME/CFS Research Roadmap
Congress has directed NIH to develop an implementation plan for the ME/CFS Research Roadmap within 180 days — a major step forward in the fight for treatments, clinical trials, and funding.
Feb 42 min read


ICE Makes Me Sick: Fund Healthcare, Not Violence
Like you, we have been watching horrors unfold especially in Minnesota. We have been checking on our #MEAction Minnesota community and sending all our love and support. This situation is heartbreaking and sickening. We’ve heard your requests to find ways to help, so we’ve created a campaign with disability activist partners so you can contact congress, sign an open letter, and share on social media. We also highlight resources and groups on the ground that you can support. IC
Jan 292 min read


When Care is Threatened, Community is Our Strength
I don’t need to tell you that these are extraordinarily difficult times. Across the country, we’re witnessing devastating cuts, acts of injustice, and widespread attacks on human rights. It’s overwhelming, it’s frightening—and yet, in moments like this, our purpose becomes even more clear. We are here to protect and uplift our community, especially those most vulnerable.Right now, unprecedented reductions in healthcare funding threaten millions of Americans, including people
Jan 222 min read


Preparing for Your Medicaid Home Assessment
Prepare for your home assessment
Dec 18, 20251 min read


Guided Meditation for ME Community
Stuart Murdoch, frontman of Belle and Sebastian, invites you to join him in a guided meditation. Through his own journey with ME, Stuart has discovered how meditation can calm and support the nervous system. #MEAction is deeply grateful to Stuart for sharing his time and talents to uplift the ME community. We encourage you to take a moment to listen and follow along with his meditation. Please adapt the practice in whatever way feels right for you.
Dec 12, 20254 min read


Freakin' Frail Campaign
New Medicaid work rules will take effect at the end of 2026. Our care and support systems have long been rigged against disabled people, and these new paperwork rules will push even more sick people off the care and support they need.Please sign our letter to the HHS Secretary urging him to recognize people with ME/CFS and Long COVID as “medically frail” so that their access to Medicaid is protected.Why Medically Frail Congress has mandated that Medicaid recipients work 80 ho
Dec 12, 20251 min read


Exciting News for MEAction UK
MEAction UK is now officially an independent UK registered charity
Dec 9, 20252 min read


Telehealth Update November 2025
Good news: Congress has extended Telehealth until January 31,2026 as part of a deal to end the government shutdown.This is not a permanent solution. So, we must continue to put pressure on Congress to make telehealth for Medicare permanent. Join #MEAction in putting pressure on Congress to make Telehealth for Medicare permanent! Call your Member now using our call script, and tell Congress to stop messing around with your healthcare!For people with ME and Long COVID, Teleheal
Nov 20, 20251 min read
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