Read the Latest in ME News and Campaigns
Never miss a beat! Subscribe to our newsletter and select “Daily Digest” to get a summary of the day’s news & actions delivered to your inbox.
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.
#MEAction Scotland’s plans for #MillionsMissing
This year, #MEAction Scotland will be doing smaller, more focused activities for #MillionsMissing than previous years, and we are
Join the UK and Scotland’s digital campaign this #MillionsMissing
May is nearly here and that means so is ME Awareness Week and #MillionsMissing! This year, #MEAction Scotland and
ME & Long COVID patients need telemedicine prescribing flexibility
DEA should amend its proposed rule to ensure access to care
NIH Must Not Overlook Evidence of Exercise Harm
Long COVID Exercise study must address safety, efficacy concerns.
#MEAction Scotland responds to the updated Scottish Good Practice Statement
The Scottish Government published the updated Scottish Good Practice Statement (SGPS) on ME-CFS on 28th February 2023. The decision
MEAction questions Long COVID exercise study’s safety, efficacy
Calls for immediate public release of RECOVER’s clinical trial design
#MEAction Colorado Works With Governor’s Office to Create A New Senior Policy Advisor Role on Long COVID and Post Viral Infection Planning–Leading to Statewide Report on Long COVID
#MEAction Colorado’s first legislative effort in Colorado began with an ME/CFS day declaration in the Colorado Legislature on February
Woman with Severe ME and EDS starving to death in NHS hospital
UPDATE: We want to provide a brief update on Sami Berry’s case and what she needs help with now.
The Scottish Parliament debate on ME
Article summary: Sue Webber MSP’s Member’s Business debate took place in the Scottish Parliament on Thursday 2nd February, 2023.
Moments that Warmed Our Hearts
This community is at the heart of everything we do. With this being a centering foundation for the work
DHSC released a new progress Report
DHSC has released an update on the progress of the work underway to support the development of a Delivery
Let’s Look at #MEAction’s Top Hits from 2022
As we ring in the new year, it is a wonderful time to reflect on how much #MEAction accomplished
Ask your MSPs to stand up for people with ME
Sue Webber MSP’s motion about ME will be debated in the Scottish Parliament on Thursday 2nd February – and
#MEAction Scotland’s November Community Call
#MEAction Scotland’s latest community call took place on Wednesday, 23rd November. People with ME from across Scotland joined four
I live at the intersection of pandemics: HIV, ME/CFS & Long COVID
Reflections on embodying intersecting identities of disease and disability
Facets of ME: Centering ME During the Holidays
Welcome to the final #FacetsOfME for 2022, where we focus on centering ME during the holidays!
My Truth, Our Trauma, & A Call to Keep Fighting
Reflections from the World AIDS Day White House Protest