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#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.
At the end of April, #MEAction UK sent the National Institute of Health and Care Excellence (NICE) a six-metre-long
Accessible Ways that People with ME can get Involved in Racial Justice #MEAction has always focused on empowering and
It is a strange time to be writing about the work of the UK ME/CFS Biobank (UKMEB); as I
A new education module designed to teach healthcare professionals about ME has been released. Send the new module to
The Washington Post published an editorial last Saturday about how researchers are warning that COVID-19 may lead to long-term,
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. FOR IMMEDIATE RELEASE:Contact: Adriane Tillman [email protected]
Since a new coronavirus emerged from Wuhan, China late in 2019, some 3.8 million cases and 265,000 deaths have
FOR IMMEDIATE RELEASE Contact InfoLaurie [email protected] A new viral video claiming to be an excerpt from a forthcoming documentary,
Ellie Rushton, from Birmingham UK, recently raised an amazing £1000 for #MEAction UK, by doing 1000 bodyweight reps every
On April 13, NIH announced two new funding opportunities for ME/CFS research: PAR-20-165, Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
At the Sundance Film Festival in January, I had the privilege of watching Crip Camp, a documentary film that premieres