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Top 10 ME/CFS Recommendations for the Long COVID National Research Action Plan
#MEAction has been hard at work continuing to advocate to the Department of Health and Human Services (HHS) on
Severe ME Artists Project 2022!
#MEAction is once again excited to announce our Severe ME Artists Project 2022 that will feature work from those
NEW YORK ACTION ALERT: NEED NY GOVERNOR KATHY HOCHUL TO SIGN ME/CFS BILL INTO LAW!
Dear New York Community- We need urgent action now to persuade New York Governor Kathy Hochul to sign our
Facets of ME: Temperature Dysregulation
Welcome to June’s #FacetsOfME! Facets of ME is an educational feature where we dive into a particular aspect (or
Dept. of Labor Updates Information on ME/CFS for Workers, Employers
The U.S. Department of Labor’s Office of Disability Employment Policy (ODEP) has updated the information on ME/CFS provided at
#MillionsMissing: 7 Days in Self Portraits with ME/CFS
After taking #MEAction’s photography workshop with photographer Lucia Doynel for #MillionsMissing, Terra Dumont produced these stunning photos as a
U.S. Healthcare Coding Revisions Enable Tracking of ME/CFS Cases
Since 2015, the 1-2.5 million Americans with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been effectively nonexistent, at least as
We can’t believe it! Another $50k matching gift!
I am so thrilled to tell you that we have another $50,000 (£39,873.50) matching gift for #MEAction’s #MillionsMissing fundraiser.
Email Doctor Unger about the Misinformation at CDC
People with ME deserve accurate & clear ME/CFS education from the Centers for Disease Control, not recycling of discredited
#MillionsMissing: Videos Created by our Amazing Community
This year’s #MillionsMissing, our community created some amazing videos that we are privileged to highlight. This is just a
#MillionsMissing MAY 2022 Wrap Up
Thank you for sharing your stories, for illustrating our common thread so that our governments, healthcare systems, and other
New T-Cell Research at the University of Massachusetts
#MEAction’s Director of Scientific and Medical Outreach, Jaime Seltzer, sat down with Dr. Liisa Selin, MD, PhD, and Dr.
Exciting news about Mayo Clinic!
We’ve got some very exciting news this week! Clinicians working at the Long COVID clinic at Mayo Clinic’s campus
New Volunteer Leadership Program Led by Experts!
We are thrilled to announce that Chimére Smith and Terri Wilder will be joining #MEAction as consultants to execute
Research Update: The NIH Intramural ME/CFS Study
National Institutes of Health researchers who began what may be the deepest biological investigation ever of myalgic encephalomyelitis/chronic fatigue
#MEAction Meets with the Department of Labor
#MEAction continues our advocacy for the #MillionsMissing in a recent meeting with the Office of Disability Employment Policy (ODEP)
#MEAction Scotland holds its first community call
Last week, #MEAction Scotland volunteers held the first in a series of community calls. The online meetings will take
Call-to-action for California: Centers of Excellence
We have a golden opportunity to secure substantial funds to address the clinical care crisis in ME/CFS and Long
Elevating stories of the #MillionsMissing to HHS leadership
#MEAction is advancing ME/CFS advocacy efforts through our ongoing engagement with U.S. federal agencies, including at the Department of
#MEAction Presents: Not Going Quietly Screening & Panel
We have a very exciting opportunity to come together and watch the award-winning documentary Not Going Quietly. We also
ME/CFS on TV (Part 3)
RETURN TO PART 1 OF THIS SERIES HERE ME/CFS ON THE ITALIAN TV SCREEN: A VIRTUOUS MODEL by Giada
The Virtual Choir is Back — Submissions now Open!
We are excited to announce that submissions are now open to join our next virtual choir! We have so
Facets of ME: Cognitive Dysfunction
Welcome to our second Facets of ME! This is an educational feature in which we choose one aspect of
ME/CFS On TV (Part 2)
RETURN TO PART 1 OF THIS SERIES HERE “THAT’S WHY THEY DON’T BELIEVE YOU, YOU DON’T LOOK SICK!”: FICTIONAL
You can Still Help Madeline!
“Madeline” is a woman who has been suffering with a post viral syndrome for 40 years which includes Severe
Black History Month
In honor of Black History Month, #MEAction has gathered a collection of articles, videos, and groups that features Black
#MEAction Continues to Get Press for ME
#MEAction continues to prioritize getting ME in the press. We are very thankful to be featured in USA Today,
NIH Comes up Short Once Again
No Increase in Funding in Latest Plan for ME/CFS Collaborative Research Centers The National Institutes of Health (NIH) has
An Update from #MEAction
#MEAction has been a leader in the fight for health equity for people with Myalgic Encephalomyelitis for the past
#MillionsMissing 2022 Will be in Two Parts
This year, we are excited to announce that #MillionsMissing will be held in two parts: May and September! #MillionsMissing
NICE guideline to be implemented in Scotland
NICE news for Scotland! Throughout the development of the NICE guideline for ME/CFS, #MEAction Scotland has been in regular
Be part of designing UWS research into ME and long COVID
UPDATE: The research team have let us know that they’ve received a huge response to this request and they
Facets of ME
We are excited to launch an all-new educational feature – Facets of ME! We will be diving into the
#MEAction Featured in Infection Control Today Whose Audience is Researchers & Medical Practitioners
As you know, Adriane Tillman, has been working extremely hard, alongside her team of volunteers to get featured in
ME/CFS on TV (Part 1)
ME/CFS IN EARLY TV DISCOURSE: QUESTIONING GOVERNMENTAL POLICIES AND CHALLENGING THE CONCEPTIONS OF DISEASE AND MEDICINE by Giada Da
Mourning the loss of Dr. Ron Tompkins
Today #MEAction joins the community in mourning the loss of Dr. Ronald G. Tompkins, MD, ScD, who passed away
NIH Long COVID research lacks clear plan to identify and track ME/CFS
MEAction has written to the National Institutes of Health (NIH) expressing our deep concern that the RECOVER Initiative research
The Last Two Years Changed the World…
What a year 2021 was! People with ME have always faced formidable challenges: every day combatting stigma, lack of understanding
CDC decides not to publish flawed ME/CFS treatments review!
As we enter the holidays we have a positive development to report coming out of yesterday’s ME/CFS stakeholder call
Apply to join the UK’s ME/CFS priority setting workshops
Over 2,000 people with ME/CFS, carers and health professionals in the UK engaged with the recent survey from the ME/CFS Priority Setting Partnership.
#MEAction Arrives in the Medieval Town of Med-Ed
Here’s a hearty hello from the Medieval Town of Medical Education! Lords and Ladies, We did it!… we got
NICE Committee Member Community Call Review
Two NICE ME/CFS guideline committee members joined #MEAction for a community call, to provide their insight into the guideline
NICE Retweeted #MEAction UK’s Dear Doctor Campaign!
On November 12th, just a few days after our launch of the Dear Doctor Campaign, @NICEGetInvolved retweeted our campaign
CDC must act now to stop flawed review of ME/CFS treatments
In advance of next week’s CDC ME/CFS Stakeholder Engagement and Communication (SEC) call, #MEAction has sent a letter to
Last chance to vote for your top ten ME/CFS research priorities in the UK
Over 1,700 people have now voted for their top ten ME/CFS research priorities in the UK. With the deadline
New Black British support group seeks members with ME and Long Covid
Darren Randon, co-founder of Well Versed Ink, is seeking new members for an online group for UK-based Black and
12 Days of Pacing Begins Today!
12 Days of Pacing Begins Today! Welcome to #MEAction’s 12 Days of Pacing! For the next 12 days will
NPR Features #MEAction in Series about Long COVID
NPR featured #MEAction in an article about long COVID called, “For patients with long COVID, chronic fatigue syndrome may
#MEAction Swinging Through The Press Jungle
Welcome to the jungle, the press jungle! It’s hot and noisy here, with news fresh off the press. Trying
#MEAction Swimming Through the Research Lagoon
Hi, everyone! It’s Jaime, the Director of Scientific & Medical Outreach at #MEAction. During this week’s #MEAction Giving Adventure
Join over 1,000 people and vote for your ME/CFS research priorities
Over 1,000 people have now voted for their ME/CFS research priorities. People with ME/CFS, carers and clinicians in the
Chat to NICE ME/CFS guideline committee members
On Tuesday 30th November at 5pm, we’re holding a community Q&A, and will be joined by two of the NICE committee members, who have spent almost 3 years working on the new ME/CFS guideline.