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Goodbye to graded exercise therapy but concerns about physical activity programmes – Community Discussion
There were significant concerns about the recommendation of a physical activity programme in the draft ME/CFS guideline, even with the caveats attached. The recommendation that a physical activity programme should be considered if patients would ‘like’ to start one, was felt to imply that there is a choice or a desire involved, rather than increased physical activity being impossible for many.
At our first community call on the draft ME/CFS guideline from NICE, training in all areas of the guideline was seen as key if it is to have an impact on the health and social care professionals implementing these recommendations.
Harmful graded exercise therapy for people with ME has been dropped in a new draft ME/CFS guideline from the National Institute for Health and Care Excellence (NICE).
We’re thrilled to announce the winners of our postcard design contest for our second annual Postcards to Doctors campaign! We
Last week the U.S. National Institutes of Health (NIH) announced it will hold its next ME/CFS Telebriefing on Thursday,
#MEAction UK is highlighting the links between “Long Covid” and ME in the press. In particular, we want people at risk to know about the danger of exercise if they have post-exertional malaise.
You can steer #MEAction UK’s response to the draft ME/CFS guideline consultation. Join a community call, respond to our social media polls, volunteer to read the evidence reviews and more!
KRISTINE NILSEN OMA Kristine Nilsen Oma is a dancer and choreographer living in Norway. She has ME, and
#MEAction UK has written to the online publication Psychology Today asking for the retraction of a stigmatising blog post.
#MEAction Scotland submitted their petition to the Scottish Parliament in May 2018. In June, Emma Shorter, #MEAction Scotland’s volunteer leading the petition, made a powerful speech to the Petitions Committee describing the desperate need for support for people with ME in Scotland.
On Wednesday, September 23 the CDC held its ME/CFS Stakeholder Engagement and Communication (SEC) conference call and the #MEAction community showed up to make our voices heard! Here is our initial summary of what you need to know.
Today is National Voter Registration Day! #MEAction along with many other organizations are sharing with their communities the importance of registering to vote for November’s general election.
Mark your calendars! The CDC will hold its next ME/CFS Stakeholder Engagement and Communication (SEC) conference call on Wednesday, Sept.
We are thrilled to share that The US ME/CFS Clinician Coalition has launched a website to provide clinicians with expert information on the diagnosis and management of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS).
#MEAction NY is co-sponsoring a free CME webinar Wednesday, September 30th, 2020 and we need to share widely so clinicians can know to register!
NIH Director Francis Collins just published a blog post highlighting the plight of COVID-19 “long haulers” and the role of citizen-science efforts at the Body Politic COVID-19 Support Group in compiling the first detailed patient survey of long COVID and analyzing the results.
Being able to communicate information effectively and efficiently is key to much of the work #MEAction does. We are
#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!
#MEAction UK has written a letter of complaint to Good Morning Britain in response to recent statements from Dr
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, Severe ME Day, Saturday, August 8th.
#MEAction UK have once again written to the National Institute for Health and Care Excellence (NICE) imploring them to
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.
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.
The NIH is doing little to expedite a coordinated, outcomes-focused plan for ME/CFS research, an enormous missed opportunity in
As more and more COVID-19 survivors report disabling, multi-system symptoms lasting months on end, the National Institutes of Health (NIH)
30TH ANNIVERSARY OF THE ADA The celebration of the 30th Anniversary of the Americans with Disability Act (ADA*) is
We are thrilled to announce the scientific journal WORK: a Journal of Prevention, Assessment & Rehabilitation has devoted an issue solely to M.E. research.
#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.
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.
During an International AIDS Society Covid-19 press conference held July 9th, Dr. Anthony Fauci (Director of the National Institute
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
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.