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NHS England omits advice to apply clinical judgement re vaccine
It has come to light that a letter from NHS England and NHS Improvement to all vaccination centres and
Waiting for Superman – UK Book Giveaway and Review
Do you want to win a free copy of Waiting for Superman? We have three copies to give away
Scottish Election! Ask your MSPs to support people with ME
If you live in Scotland, please join our campaign to ask your MSPs to pledge their support for people
#MEAction’s ACTIVIST CAMP! – the Highlights!
It’s a wrap! Last weekend concluded the final session #MEAction’s first ever ACTIVIST CAMP!, a teach-in series for activists
UK COVID-19 Vaccine Priority and Template Letters
The JCVI make it clear that the vaccine priority list is not exhaustive and clinical judgement should be applied for people with ME.
APPGs should collaborate on ME and Long Covid
#MEAction UK has highlighted three specific areas of overlap that could benefit from a collaborative approach by the All Party Parliamentary Groups.
Latest report shows people with ME have been failed by Scottish Government
The Scottish Government has said it must not wait to address the needs of the ME community, but its latest report indicates that this is precisely what it has done and continues to do.
We’re Asking Congress To NOT Forget ME!
COVID-19 has significantly changed our lives in so many ways. With the recent increase in funding to study long
UK government should add ME to vaccine priority list
#MEAction has written to the Chief Medical Officer and the Joint Committee on Vaccination and Immunisation to call for ME to be included on the vaccination priority list.
Update on Thane’s civil commitment case
Editor’s note: This update is provided by Thane’s care team. UPDATE: Friday, February 5 , 2021 Thane was released
Hospital Trying to commit person with severe ME to mental health ward
PwME appeals for help “They’re trying to commit me to a mental health ward with very severe ME… I
Enrolling: International ME/CFS Family Impact Study
This online international ME/CFS Family Impact Study looks at the quality of life of patients and their family members.
ME Experts recommendations for getting A Covid-19 vaccine
The ME community has had a lot of questions about whether it is safe to get a COVID-19 vaccine.
UK press team hits again with Mail Online article
#MEAction UK’s press team was instrumental in getting an excellent article published in the Daily Mail at the beginning of January. The article criticises the blanket advice of GPs to recommend exercise for long COVID patients without taking into consideration those with symptoms of ME, particularly post-exertional malaise.
Moving short film “This is ME” nominated for award – you can help it win!
Moving short film “This is ME” shares more in nine minutes than most people with ME can begin to share in words alone.
NIH official confirms $1.15 billion funding for long COVID research
We want to make you aware of new funding allocated through the Covid-19 relief package that has potential to
NIH Hosts Workshop on Long COVID – Read the Summary
On December 3-4, 2020, the National Institutes of Health (NIH) / National Institute of Allergy and Infectious Diseases (NIAID)
#MEAction UK response to draft ME/CFS guideline from NICE
#MEAction UK volunteers have worked to produce a robust and comprehensive response to the draft ME/CFS guideline from NICE.
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!