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#MEAction’s Jaime Seltzer Selected for TIME100 Health 2024
We are thrilled to share with you that Jaime Seltzer, #MEAction’s Scientific Director, has been selected for TIME100 Health
Interview With Lauren Saikkonen – Author of Invisible Illness: Coming of Age, Chronic Illness, and a Mother’s Will to Survive
#MEAction is once again thrilled to share a new book, Invisible Illness: Coming of Age, Chronic Illness, and a
Home Test To Treat: Access Free Home Telehealth for Flu & COVID-19 Infections
#MEAction and Body Politic* are excited to collaborate with Home Test To Treat to share their critically important resource!
#NotJustFatigue – Community Member Launching A New Website Today!
#MEAction is excited to announce community member, Elizabeth Ansell, created a new website, #NotJustFatigue, launching today, March 1, 2024!
#MEAction’s NIH Study Response
NIH’s recent paper on ME/CFS elicited strong reactions from the community.
Black ME Voices: Q&A with Teona Studemire
With it being Black History Month, it was crucial to me to make sure we spotlighted someone from the
NIH ME/CFS Research Roadmap Update–Public Comment Period Now Open
The NIH ME/CFS Research Roadmap public comment period is open now with a deadline of March 8th. #MEAction is
Valentine’s Day Interview with Jamison Hill & Book Promotion
We are excited to bring you a special Valentine’s Day promotion of Jamison Hill’s most recent book, Something’s Wrong
#MEAction’s Volunteer Program Revamped
Exciting news: #MEAction revamped our volunteer program for the new year! We are honored to have wonderful volunteers including
#MEAction UK’s letter to The Telegraph, Feb 2024
In Judith Woods’ Comment piece on 2nd February 2024, ‘28-year-old Lauren Hoeve died by euthanasia – to a degree,
#MEAction UK and Scotland update prevalence figures based on new data
Both the UK and Scotland branches of #MEAction will start using updated figures for the prevalence of ME, based
#MEAction Writers Inspired by WGI Workshops
Last fall, #MEAction partnered with the Writers Guild Initiative (WGI) to offer writing workshops to twenty-five community members. #MEAction
#MEAction Meets with the Office of Long COVID Research and Practice
On January 17th, 2024, #MEAction convened a constructive meeting with Dr. Ian Simon, the newly appointed director of the
Historic Hearing on Long COVID in the Senate HELP Committee
The U.S. Senate HELP Committee held a historic hearing about Long COVID last Thursday to discuss advancing research and
#MEAction UK’s letter to the BBC over the show Dragons’ Den
We are writing to express our deep concerns about a segment featured on an episode of Dragons’ Den, which
Senate HELP Committee Shows Strong Support for Long COVID
The U.S. Senate HELP Committee held a hearing on Long COVID yesterday to discuss advancing research and improving patient care.
Senate HELP Committee to Hold Hearing on Long COVID
U.S. Senate HELP Committee to Hold Hearing on Long COVID The U.S. Senate Committee on Health, Education, Labor &
Beth Mazur — Memorial Service and Obituary
As many of you know, we lost a wonderful person recently. Beth Mazur passed away after battling ME for
Sad News From Our Community — Content Warning
We are sharing some sad news. Please put your health first. Content warning for sharing the loss of a community member.
Chronic Illness Survey Adventure Finishing this Month!
Two years ago, #MEAction embarked on an ambitious project, the Chronic Illness Survey Adventure! The Adventure is a survey
CANARY CORPS – Alison’s Story
Have you registered yet to join us this Wednesday, December 6th at 4pm ET / 1pm PT for a
A Year of Exciting Medical Education Achievements
A year ago, we were proud to announce that #MEAction and Mayo Clinic Rochester had won a grant for
#MEAction Shares Our Thanks for Your BOLD ACTIONS
During this time of thankfulness and gratitude, #MEAction staff wants to share what BOLD ACTIONS we are thankful our
Check out the Updated, Expanded, Revamped MEpedia!
Great news! About six months ago, we began a project to update, expand, and revamp MEpedia. Due to a generous grant,
CANARY CORPS – New Grassroots Program Coming Soon
I’ve got exciting news to share! In early 2024, #MEAction will launch a new grassroots, peer-run program in the
Announcing: New NIH Conference Travel Scholarship for Providers and Medical Students!
#MEAction is thrilled to announce a new travel scholarship for providers and medical students to the National Institutes of
#MEAction Partners with Writers Guild Initiative to Offer Writers Workshops
#MEAction is excited to announce we are partnering with the Writers Guild Initiative (WGI) to offer creative writing workshops
Advocacy Win! Disability Partnerships Make a Difference for People with ME
The National Institutes of Health (NIH) announced they will designate people with disabilities as a population with health disparities.
MEAction Scotland’s Response to: My full reality: the interim delivery plan on ME/CFS
As a charity we were pleased to be able to submit a longer response than is possible using the
#MEAction State Chapters Are Making Advocacy Moves
#MEAction is thrilled to share the incredible work our State Chapters have been up to over the past couple
#MEAction UK’s Response to DHSC (My full reality: the interim delivery plan on ME/CFS)
As a charity we were pleased to be able to submit a longer response than is possible using the
Join #MEAction Maryland’s #HelpMESenator Campaign
We are writing this article to share some exciting news! On Tuesday, September 26, ME advocates delivered copies of
“#MillionsMissing is our drumbeat”
RSVP TODAY: We are hosting a preview party for the new, virtual Home of the #MillionsMissing this Sunday, September 24th,
JNNP to publish edited rapid response by MEAction UK.
MEAction UK have been in communication with the BMJ and are delighted to announce that the Journal of Neurology,
#MEAction and Long COVID Justice Issue Press Statement about NIH Failure of Long COVID
#MEAction and Long COVID Justice issued a press statement yesterday about our communities’ deep concerns regarding the rollout of
#MEAction UK interim update on JNNP complaint.
#MEAction UK has now received a reply to our complaint about the removal of our rapid response from the
#MEAction’s Summer Work Heats Up
Halfway through summer, we have so much to report about our immense, day-to-day work advocating for M.E., for you,
Mt Sinai PEM Study Now Recruiting
Dr. Natelson at Mt. Sinai is recruiting people to study PEM. Reimbursement for travel and time will be available.
DHSC interim delivery plan on ME/CFS
My full reality: the interim delivery plan on ME/CFS is a great opportunity for the ME community to make
Severe ME Artist Project 2023 — Gallery
A collection of works by artists with severe ME.
MEAction UK challenges removal of rapid response from JNNP website.
MEAction UK has sent the following letter to the BMJ Editor in Chief, the JNNP Editor in Chief the
#MEAction Calls for ME & Long COVID to be Part of COVID-19 Task Force
Urge Congress to hold our federal health and research agencies accountable for ME & Long COVID.
#MEAction & Body Politic: We Are Stronger Together
Announcing #MEAction and Body Politic’s new collaboration: we are excited to announce that #MEAction will now host Body Politic’s
MEAction UK submits a rapid response to the JNNP in support of NICE.
Below is the text of MEAction UK’s rapid response submitted to the JNNP article that was published 10th July
MEAction UK’s response to the Guardian article 11 July 2023
MEAction UK is preparing a detailed response to the latest published paper attacking the NICE Guideline on ME/CFS. In
Severe ME Artists Project 2023
#MEAction is thrilled to announce our Severe ME Artists Project 2023 that will feature work from those within the
”Bed activism” at the Washington Monument & A Politics of Care
I’ve been involved in planning many #MillionsMissing actions during my time with #MEAction, but for me, protesting at the
#MEAction Scotland response to the survey of Health Boards
On 16th May 2023, the Scottish Government published the findings from an analysis of surveys issued to NHS Health
Staff Share Their First-Hand Experiences from #MillionsMissing 2023
While we are busy working to create a new online experience to highlight all the images and speeches from
Why We Keep Telling the Story of ME to the Press
Our press work continues to drum a strong beat as we tell the story of ME everyday to the
#MillionsMissing 2023: Scotland calls for healthcare education
This year, #MEAction Scotland’s #MillionsMissing campaign focussed on raising awareness of the reality of living with ME and called
Long COVID & ME/CFS Communities to Demonstrate TODAY on National Mall
Washington, DC – The ME/CFS and Long COVID communities will demonstrate today with the installation of 300 cots on the National Mall to represent the millions of people missing from their lives due to post-infectious disease. We are the #MillionsMissing.
Creative Fundraising Initiatives for #MEAction
Calls for immediate public release of RECOVER’s clinical trial design
#MEAction & Mayo ME/CFS Algorithm is Live!
Together, we built a new ME/CFS diagnostic & treatment algorithm for Mayo Clinic– including info on severe ME.