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Meet the Volunteers: Janet and Helen
“The Scottish Government has responded to our petition with a range of actions; if these are seen through, I am hopeful of change in Scotland.”
Meet the Volunteers: Hayley and Susan
I want to raise awareness and educate as many people as possible. There is a real lack of understanding for ME generally as well as within the medical world.
#MEAction State Chapters Have been Busy
#MEAction State Chapters have been busy this year working to expand awareness, build support for House Bill H.R. 7057,
6 ways to have your say in the NICE ME/CFS guideline consultation
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!
Sian: Stop. Rest. Pace.
At age 16 I got a virus. Back then I did the right thing: Stop. Rest. Pace. I recovered. At age 19 I got a virus. My GP told me not to stop. Not to rest. Not to pace. 8 years on I have not recovered.
Meet the Volunteers: Paul and CJ
I look forward to our weekly office hour video call as this can be my only interaction with others outside of my family. It’s also the only meeting I’ve done where it’s still ok if you’re in your bed!
#MEAction UK’s membership of Forward-ME
#MEAction UK will continue to collaborate where we can be more effective together. We believe that each ME charity and patient organisation in the UK plays a vital role in working towards common goals.
Dance with ME: Show up virtually to support an artist with ME!
KRISTINE NILSEN OMA Kristine Nilsen Oma is a dancer and choreographer living in Norway. She has ME, and
Meet the Volunteers: Sian and Sarah
#MEAction’s emphasis on campaigning, and philosophy that the biggest changes would come from forcing institutions with power to listen, resonated with me.
Psychology Today fails in its duty of care to people with ME
#MEAction UK has written to the online publication Psychology Today asking for the retraction of a stigmatising blog post.
#MEAction Scotland Petition: Achievements and Agenda-setting
#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.
HERE’S WHAT HAPPENED AT THE CDC’S SEP. 2020 ME/CFS MEETING
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.
NATIONAL VOTER REGISTRATION DAY- SEPTEMBER 22, 2020
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.
WHAT TO LOOK OUT FOR AT THE CDC’S SEP. 2020 ME/CFS MEETING
Mark your calendars! The CDC will hold its next ME/CFS Stakeholder Engagement and Communication (SEC) conference call on Wednesday, Sept.
Call for Artists: Postcards to Doctors
We’re excited to announce that we are taking submissions for our second annual Postcards to Doctors initiative! Read how to submit.
All Doctors Should Go To This Website For ME Information!
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 New York Co-Hosts Free Webinar for Clinicians on September 30th!
#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!
MAYO CLINIC REMOVES GET AND CBT FROM CFS WEBPAGE
The Mayo Clinic recently removed harmful recommendations of Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT) for myalgic
NIH Director: long haulers “decided to take matters into their own hands”
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.
TRAINING OPPORTUNITY TO JOIN OUR UK AND SCOTLAND SOCIAL MEDIA TEAMS
Being able to communicate information effectively and efficiently is key to much of the work #MEAction does. We are
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