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OUR SUMMER IN REVIEW: ADVOCACY AND EDUCATION
What a Summer for Advocacy and Education! We know the summer isn’t over yet, but A LOT has been happening with
What’s Happening for ME in Congress: H.R. 7057
We are so proud and grateful for the work of Solve M.E., #MEAction’s activists, state groups, volunteers and supporters who have rallied behind H.R. 7057.
ME/CFS and Long COVID: What’s the Connection?
#MEAction hosted a seminar for post-COVID-19 “long haulers” on Friday, August 7, to learn more about ME/CFS as a potential diagnosis after viral infection, in partnership with Body Politic and the COVID-19 Working Group New York. Watch the seminar now!
GOOD MORNING BRITAIN GETS IT WRONG ON POST-COVID TREATMENT AND ME
#MEAction UK has written a letter of complaint to Good Morning Britain in response to recent statements from Dr
LAST WEEK IN REVIEW: CNN, LONG-COVID SEMINAR, SEVERE ME DAY & MORE!
Last week was inspiring and eventful! We had a huge turn-out for our US Advocacy Meeting about the National
Let Us Honor the Most Severe in our Community Today!
Let us honor the most severe in our community today, Severe ME Day, Saturday, August 8th.
OPEN LETTER DEMANDS ACTION TO SAFEGUARD PEOPLE WITH ME, NOT JUST POST-COVID PATIENTS
#MEAction UK have once again written to the National Institute for Health and Care Excellence (NICE) imploring them to
RESOURCES FOR COVID-19 “LONG-HAULERS” FROM THE ME/CFS COMMUNITY
A growing number of people report persistent symptoms long after being infected with the SARS-CoV-2 virus. The “long-haulers,” a name coined for long-term COVID-19 patients, experience ongoing fatigue, headaches, shortness of breath, muscle pain, sleep disturbances, cognitive impairments, intermittent fevers, and more.
REPORT PART 2: NIH LACKS COORDINATED RESPONSE FOR LONG COVID RESEARCH
The NIH is shaping research initiatives to study the long-term consequences of COVID-19 (long COVID), but it lacks the coordinated, outcomes-focused strategy necessary to deliver biomarkers and treatments to the people who need them.
REPORT PART 1: NIH IS NOT ADVANCING ME/CFS RESEARCH
The NIH is doing little to expedite a coordinated, outcomes-focused plan for ME/CFS research, an enormous missed opportunity in
REPORT SUMMARY: WHAT NIH IS (AND ISN’T) DOING FOR ME/CFS & LONG COVID RESEARCH
As more and more COVID-19 survivors report disabling, multi-system symptoms lasting months on end, the National Institutes of Health (NIH)
#MEACTION CELEBRATES THE ACTIVISM THAT MADE THE AMERICANS WITH DISABILITY ACT A REALITY
30TH ANNIVERSARY OF THE ADA The celebration of the 30th Anniversary of the Americans with Disability Act (ADA*) is
Coming to Terms with My Disability
My husband often pushes me home in my son’s stroller because I have enough energy to get to the
ANNOUNCING A SPECIAL JOURNAL ISSUE DEDICATED TO ME
We are thrilled to announce the scientific journal WORK: a Journal of Prevention, Assessment & Rehabilitation has devoted an issue solely to M.E. research.
Take action: graded exercise harming people with ME and COVID long haulers
#MEAction UK has sent an open letter to Matt Hancock asking him to recognise the harm caused by graded exercise therapy. We are calling on him to ensure all advice for people with ME, and those at risk of developing ME post-COVID, warns of the harm from graded exercise therapy. Join us by asking your MP to write to Matt Hancock too and telling them about your experience of ME.
National Disability Voter Registration Week
National Disability Voter Registration WeekJuly 13-17, 2020 #MEAction is excited to participate in National Disability Voter Registration Week! Let’s
Graded exercise therapy not recommended for post-COVID fatigue, say NICE
The National Institute for Health and Care Excellence (NICE) have released a document entitled “interim findings”, stating that the recommendation of graded exercise therapy for mild and moderate ME/CFS should not apply to people with fatigue following COVID-19. They note that the existing guideline was published in 2007, many years before the pandemic, and that they are aware of concerns around graded exercise therapy.
Dr. Anthony Fauci says that post-covid syndrome “is highly suggestive of” myalgic encephalomyelitis
During an International AIDS Society Covid-19 press conference held July 9th, Dr. Anthony Fauci (Director of the National Institute
ADA 30th Anniversary–Stories Wanted
The 30th of the anniversary of the American Disability Act (ADA) is fast approaching–July 26th. As a way to
Post-COVID research & clinical care must include ME/CFS
People with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been concerned since the start of the coronavirus pandemic that a
An Interview with JD Davids: Lessons from an Illder (Chronically Ill Elder) on Pride, activism, and accessibility
JD Davids holding a protest sign that reads ACT UP and Occupy Wall Street End AIDS. JD Davids speaking
£3.2million granted for largest ME/CFS DNA study ever
Funding for the world’s largest genetic study into myalgic encephalomyelitis (ME), led by a partnership of patients and scientists, has been announced. Thanks to £3.2 million funding, awarded jointly by the Medical Research Council and National Institute for Health Research, work can begin on DecodeME, the ME/CFS DNA study that hopes to reveal the tiny differences in a person’s DNA that may affect their risk of developing ME/CFS, and the underlying causes of the condition.
#MEAction Supports Health Care at Home Act
#MEAction is excited to announce our support of the Health Care at Home Act, which increases telemedicine opportunities during
NICE continue to promote defunct treatment for post-viral illness
At the end of April, #MEAction UK sent the National Institute of Health and Care Excellence (NICE) a six-metre-long
Scientists Call for More European Research on ME
Editor’s Note: The below press release is from fellow ME advocates at the European ME Coalition (EMEC). The original
#MEAction Puts ME into the Spotlight
Since the coronavirus pandemic hit, #MEAction has pitched news stories and worked with major news outlets to sound the
APPG on ME – Next meeting scheduled
The All-Party Parliamentary Group (APPG) on ME will be resuming work on their report at a virtual meeting on
Accessible Ways for People with ME to Get Involved in Racial Justice
Accessible Ways that People with ME can get Involved in Racial Justice #MEAction has always focused on empowering and
The UK ME/CFS Biobank: a rich resource of samples and data
It is a strange time to be writing about the work of the UK ME/CFS Biobank (UKMEB); as I
New ME education module available for healthcare professionals
A new education module designed to teach healthcare professionals about ME has been released. Send the new module to
Washington Post Editorial Says Some COVID-19 Patients Will Develop ME
The Washington Post published an editorial last Saturday about how researchers are warning that COVID-19 may lead to long-term,
Black Lives Matter.
George Floyd. Breonna Taylor. Ahmaud Arbery. Tony McDade. There is so much pain, suffering, grief, and anger across the
When POC Can’t Get a Diagnosis, Go Unseen
For decades, myalgic encephalomyelitis (ME) – also commonly called chronic fatigue syndrome – was erroneously portrayed as a white
#MillionsMissing 2020 was powerful (full report)!
*We added an update below. Videos like the “I got a virus” video from #MEAction UK and #MEAction Scotland
#MillionsMissing Choir Sings
These singers, fighting everyday to live with the debilitating disease of Myalgic Encephalomyelitis, (ME) offer their love, support, and
Citizen science highlights non-recovery in COVID-19 patients
Recently, #MEAction received what may be the first, participant-led analysis of COVID-19, entitled What Does COVID-19 Recovery Actually Look
Researchers Say COVID-19 Will Lead to Surge in Chronic Illness, ME Sufferers Speak Out.
Researchers Say COVID-19 Will Lead to Surge in Chronic Illness, ME Sufferers Speak Out. FOR IMMEDIATE RELEASE:Contact: Adriane Tillman [email protected]
#MillionsMissing: Artists & Storytellers
Over the years, we’ve seen incredible pieces of art from people with ME. Many of these artworks move us,
Researchers Expect COVID-19 will Cause Surge of Chronic Illness, including ME
Since a new coronavirus emerged from Wuhan, China late in 2019, some 3.8 million cases and 265,000 deaths have
It’s #MillionsMissing Week!
It’s here. It’s #MillionsMissing week! Are you ready to gather allies, express your art, share your story, tune into some
Equip yourself to fight disinformation!
Over the last many months, social media platforms like Twitter, Facebook, and YouTube have been flooded with disinformation about COVID-19. We
DISCREDITED VIRUS RESEARCHER PUSHES CORONAVIRUS DISINFORMATION
FOR IMMEDIATE RELEASE Contact InfoLaurie [email protected] A new viral video claiming to be an excerpt from a forthcoming documentary,
1000 Reps a Day for #MEAction – Fundraiser success!
Ellie Rushton, from Birmingham UK, recently raised an amazing £1000 for #MEAction UK, by doing 1000 bodyweight reps every
Thousands add messages to 6m long card
In light of an oncoming wave of people experiencing post-viral complications and potentially post-viral ME, telling our story is
NIH announces two new funding opportunities for ME
On April 13, NIH announced two new funding opportunities for ME/CFS research: PAR-20-165, Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
We Are Essential Campaign
#MEAction is going to embark on a four week campaign, #WeAreEssential, asking Congress to recognize that the disability/chronic illness community is ESSENTIAL and must be included in the next Covid-19 packages.
NICE suspend work on new ME guidelines
The National Institute of Health and Care Excellence (NICE) have suspended work on all guidelines currently in development due
Saturday, March 28th: Crip Camp virtual screening and Q&A
At the Sundance Film Festival in January, I had the privilege of watching Crip Camp, a documentary film that premieres
Resources for parents with ME during COVID-19
Parents with ME have had to learn to be creative and flexible in their parenting.This will be key in
APPG on ME: Biomedical Research Meeting
The All-Party Parliamentary Group (APPG) on ME held its first meeting on March 3, where biomedical research was discussed.
Covid-19 #MillionsMissing Update
The situation of COVID-19 is rapidly changing. We wanted to be optimistic that this situation would improve for the
Send your stories for London #MillionsMissing
Exciting News for 2020! #MillionsMissing London is in Parliament Square on 13th May. London will play host to a
Invite your Doctor to learn about ME – Medical Education Event in London
March 11 Update: After thoughtful deliberation, we have made the difficult but necessary decision to postpone our Medical Education