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UPDATE: The research team have let us know that they’ve received a huge response to this request and they
As you know, Adriane Tillman, has been working extremely hard, alongside her team of volunteers to get featured in
MEAction has written to the National Institutes of Health (NIH) expressing our deep concern that the RECOVER Initiative research
As we enter the holidays we have a positive development to report coming out of yesterday’s ME/CFS stakeholder call
Over 2,000 people with ME/CFS, carers and health professionals in the UK engaged with the recent survey from the ME/CFS Priority Setting Partnership.
On November 12th, just a few days after our launch of the Dear Doctor Campaign, @NICEGetInvolved retweeted our campaign
In advance of next week’s CDC ME/CFS Stakeholder Engagement and Communication (SEC) call, #MEAction has sent a letter to
Over 1,700 people have now voted for their top ten ME/CFS research priorities in the UK. With the deadline
Darren Randon, co-founder of Well Versed Ink, is seeking new members for an online group for UK-based Black and
Over 1,000 people have now voted for their ME/CFS research priorities. People with ME/CFS, carers and clinicians in the
Hey folks, it’s me Ben. During this week’s #MEAction Giving Adventure we moved through the Forest of Federal Agencies
The next meeting of the All-Party Parliamentary Group on Myalgic Encephalomyelitis (APPG on ME) will take place from 2
#MEAction summarized the scientific talks about ME/CFS and Long COVID presented at the International Association of Chronic Fatigue Syndrome
Media coverage of the publication of the new NICE guideline in the UK was impressive in its geographical spread
The new ME/CFS guideline contains some major improvements. We’re wanting to thank the lay members and others who fought so hard for these.
Thousands living with chronic illness ME are listened to after years of fighting to be heard – Press Release
Press Release After 14 years of recommending graded exercise therapy to people with myalgic encephalomyelitis (ME), the National Institute
The National Institute for Health and Care Excellence (NICE) has now published its ME/CFS guideline and we are delighted
Take the survey The ME/CFS Priority Setting Partnership (PSP) is giving you the opportunity to define your top ten
Be sure to attend the telebriefing by the Trans-NIH ME/CFS Working Group this Friday (10/22) at 3PM ET. The
After NICE’s roundtable, Janet Sylvester tells us: “I felt this was a positive meeting. There were large areas of agreement from all attendees, including all acknowledging the terrible experiences people with ME have had to endure. Together, the representatives from ME patient organisations were able to strongly get across the reality for people living with ME. I’m optimistic the guidelines will be published.”
#MEAction UK will be sending a representative to the NICE roundtable discussion on the final ME/CFS guideline, and have had a pre-meeting with NICE to raise our concerns about the delay to publication.
#MEAction is proud to be a founding member of the World ME Alliance, a coalition of national ME/CFS organisations,
NICE announced today that it will hold a roundtable in September as the next step in the publication of
Together with six other organizations, we have submitted a proposal to the National Center for Health Statistics (NCHS) to
As part of the coalition Forward-ME, MEAction UK is pleased to share below, the latest statement from the group
We call on the National Institute for Health and Care Excellence (NICE) to publish the finalised ME/CFS guideline in
#MEAction is excited to share new pieces of work from the Writing From Our ME Lives writing group. Click
There is widespread anger in the ME community today as NICE announced that it will not be publishing their
Over 7K sign #MEAction’s response to CDC
On Tuesday 24th August at 5pm, we’re holding a community Q&A, and will be joined by two of the NICE committee members, who have spent almost 3 years working on the new ME/CFS guideline.