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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.
#MEAction’s work in the Forest of Federal Agencies
Hey folks, it’s me Ben. During this week’s #MEAction Giving Adventure we moved through the Forest of Federal Agencies
UK Parliamentary Group to discuss new ME/CFS guideline
The next meeting of the All-Party Parliamentary Group on Myalgic Encephalomyelitis (APPG on ME) will take place from 2
Tell your Doctor that GET is gone
The updated NICE guideline on ME/CFS contains substantial changes that alter the treatment and management of people with ME
In case You missed it!: Fall Roundup
Wow! So much has happened in the last three months. Between the historic change to the National Institute for
Read about the research happening on ME and long COVID
#MEAction summarized the scientific talks about ME/CFS and Long COVID presented at the International Association of Chronic Fatigue Syndrome
How the media reported on the UK’s new ME/CFS guideline
Media coverage of the publication of the new NICE guideline in the UK was impressive in its geographical spread
Get Germany to 50K signatures – Anyone Can Sign!
A team of ME/CFS advocates have launched a petition to raise awareness about the dire situation in Germany. Help
Send a message of thanks to NICE committee members
The new ME/CFS guideline contains some major improvements. We’re wanting to thank the lay members and others who fought so hard for these.
Thousands living with chronic illness ME are listened to after years of fighting to be heard – Press Release
Press Release After 14 years of recommending graded exercise therapy to people with myalgic encephalomyelitis (ME), the National Institute
Final NICE ME/CFS guideline published – find out the big news!
The National Institute for Health and Care Excellence (NICE) has now published its ME/CFS guideline and we are delighted
Choose your top ten ME/CFS research priorities – UK survey launched
Take the survey The ME/CFS Priority Setting Partnership (PSP) is giving you the opportunity to define your top ten
Statement from Forward-ME on NICE Roundtable
After NICE held its roundtable to discuss the new ME/CFS guideline, Forward-ME (which #MEAction UK is a member of)
Is NIH blowing another opportunity to advance ME/CFS research?
Be sure to attend the telebriefing by the Trans-NIH ME/CFS Working Group this Friday (10/22) at 3PM ET. The
Stanford study (no longer enrolling)
Who: Ron Davis’s lab at Stanford University is conducting a functional microbiome study in collaboration with Harvard University and
“The treatment of ME has been Dickensian” – NICE’s roundtable on the ME/CFS guideline
After NICE’s roundtable, Janet Sylvester tells us: “I felt this was a positive meeting. There were large areas of agreement from all attendees, including all acknowledging the terrible experiences people with ME have had to endure. Together, the representatives from ME patient organisations were able to strongly get across the reality for people living with ME. I’m optimistic the guidelines will be published.”
A Response to New Yorker Article on Long COVID
A person with ME (who wishes to remain anonymous online) sent this letter to the author of The New Yorker
An update on the NICE roundtable from #MEAction UK
#MEAction UK will be sending a representative to the NICE roundtable discussion on the final ME/CFS guideline, and have had a pre-meeting with NICE to raise our concerns about the delay to publication.