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#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
Take Action Virtually with our White House Protest
AIDS, ME/CFS & Long COVID activists demand Biden, Congress fund pandemic plans
On World AIDS Day, We’re Taking Action at the White House
White House Must Confront Global Health Nightmare of Colliding Pandemics
Infection-associated chronic disease experts needed at ARPA-H
Congress launched ARPA-H (the Advanced Research Projects Agency for Health) this past March to focus on high-risk, high-reward research
BOLD ACTION is a Commitment to Healthcare Justice for People with ME
BOLD ACTION to me, means mobilizing our community to publicly demonstrate our deep and intense—as opposed to shallow and
What Primary Care practitioners need to know about the new NICE guideline for myalgic encephalomyelitis/chronic fatigue syndrome in adults
Caroline Kingdon’s new paper on the NICE guideline for ME was co-written with #MEAction UK volunteer Adam Lowe, as
#MEAction Response to NY Magazine’s Egregious Article on ME and Long COVID
#MEAction has sent the following email to editors at New York Magazine to request it remove its fallacious article about Long COVID and ME.
#MEAction’s BOLD Press Strategy Leads to BIG Press Payoff!
Taking BOLD ACTION with our press outreach has led to national media writing about ME.
Interview with #MillionsMissing France: Rally in Bourges
#MillionsMissing France has been busy.
Ask your MSPs to sign motion S6M-06112 and support people with ME
At #MillionsMissing Scotland many MSPs pledged their support for people with ME, and now they have a chance to
Long COVID’s U.S. Economic Impact Est. $140-$600 Billion Annually
Post-viral conditions like ME/CFS provide guidance for estimating the economic impact of Long COVID.
New Diagnostic Codes for ME/CFS in the US ICD-10-CM
Code change will ensure US can track diagnosed cases of ME/CFS in newly created electronic health records
Members of the Scottish Parliament pledge their support for #MillionsMissing
On Wednesday 28th September, #MEAction Scotland led a successful #MillionsMissing demonstration outside the Scottish Parliament – the first time
#MillionsMissing 2022: Activism From Home Was Beyond Impressive
There has been so much happening since the #MillionsMissing protest on September 19th. We’ve shared some of our amazing
Tell HHS about your experience of healthcare discrimination
People with ME, Long COVID and other complex, chronic diseases have experienced all kinds of healthcare discrimination. Now there
#MEAction & Mayo win Grant for Diagnostic Improvement
Amazing news! #MEAction and Mayo Clinic applied for a grant together from the Society to Improve Diagnosis in Medicine to transform the diagnostic and treatment process at Mayo Clinic Rochester for people with ME/CFS!
DHSC release progress update.
DHSC has released an update on the progress of the work underway to support the development of a Delivery
#MillionsMissing Press Hits are Rolling In!
The press hits are rolling in! The media showed up in a big way yesterday to cover our #MillionsMissing
Protest at White House to Tell President Biden “Pandemic Is NOT Over”
Protesters disabled by Long COVID and myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) lay down on the White House sidewalk today risking arrest to tell President Biden that the pandemic is not over, and that millions are being disabled from post-viral disease, including Long COVID and ME/CFS.