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Scottish Sunday Express Publishes Comment Piece about ME
The Scottish Sunday Express published a Comment piece by Emma Shorter who shared her experience of getting a virus
New graded exercise warning on current ME/CFS guideline
#MEAction UK has just received a momentous email from the National Institute for Health and Care Excellence (NICE), advising us that they have updated the warning on the 2007 CFS/ME guideline, directing health professionals to the new draft recommendations on graded exercise therapy.
A note from Holly | #MEAction’s Social Media Coordinator:
I am so thankful that I get to witness the extraordinary compassion of this community on a daily basis.
Advocacy Update from Finland
1. “Good practise” guidelines for ME/CFSThe Finnish Medical Society Duodecim published in November a draft for new guidelines for
#MEAction Responds to the Observer Article Dismissing ME and Long Covid Patients as Hysterical
Last Sunday, the Observer published an article called, “Long Covid: Is This Now Me Forever?” that derides and stigmatizes
#MEAction joins Solve M.E. & 18 other orgs to author letter to congress
#MEAction is proud to join Solve ME/CFS Initiative (Solve M.E) and 18 other chronic disease stakeholders to sign a
Does the US spend more Money Researching diseases affecting men?
Does the U.S. spend more money researching diseases that primarily affect men? The answer is emphatically yes, according to
Superbloom, a new platform for women with chronic illness
Below, we chat with Superbloom founder, Erin Berman, about her own struggle with chronic illness, hopes for Superbloom, and her issue with “positive washing.”
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.
“Loopholes need closing” – ME/CFS draft guideline community discussion
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.
Important News from Jennifer Brea
Today we announce that #MEAction’s co-founder and executive director, Jennifer Brea, is going to be transitioning to a board
U-Turn on ME/CFS Guidelines Could Help Long Covid Patients – Press Release
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).
Announcing the Launch of Postcards to Doctors 2020!
We’re thrilled to announce the winners of our postcard design contest for our second annual Postcards to Doctors campaign! We
#MEAction sends letter to NIH ahead of ME/CFS meeting
Last week the U.S. National Institutes of Health (NIH) announced it will hold its next ME/CFS Telebriefing on Thursday,
Long COVID Patients Warned of Damaging Exercise Programme
#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.
Meet the Volunteers: Denise and Mal
We are winning the awareness battle – there is a way to go yet, but society is taking ME more seriously now than even 4 or 5 years ago.
Meet the Long Haulers Developing ME/CFS
#MEAction sent out a press release last week to 300 major publications in the US introducing them to the
Meet the Volunteers: Karima and Pam
It was brilliant to find people who not only understood life with ME but were fighting to make it better. I soon realised there was a lot of work happening all year round, far beyond #MillionsMissing, and I’ve been helping where I can ever since.
Stanford Medical Students Watch Unrest
Many thanks to folks at Stanford University for screening Unrest twice this month with #MEAction to educate health care professionals and medical students.
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.