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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.
MEAction Response to CDC #MEAction has released a draft response to the CDC’s flawed systematic evidence review on ME/CFS
She Was a Specialty Food Shop Owner Before She got Diagnosed. Now She’s Writing a Cookbook for Others with ME.
Join #MEAction as we chat with Rachel Riggs to discuss her forthcoming cookbook, Clean Eating Foodist, whose recipes are designed for food-sensitive people with ME such as herself.
Darren Randon, a poet, qualified teacher, community builder, facilitator, host and co-founder of Well Versed Ink from Thornton Heath,
#MEAction CA’s advocacy work resulted in getting an article & interview published in Medical Board of CA’s newsletter!
#MEAction is excited to announce our Severe ME Artists Project which will feature work from those within the severe ME community in honor of Severe ME Day on August 8th! This project will be an opportunity for those with severe ME to showcase their artwork (whether it be writing, photography, drawing, singing, or any other medium that illustrates their talents) with multiple ways to participate based on a person’s energy levels.
Activism comes in many forms, and #MEAction recognizes the significant role that art can play, not only as healing
The U.S. Centers for Disease Control and Prevention (CDC) has published interim guidance for evaluating and caring for patients
Earlier in 2021, concerns were raised by people with ME about the REGAIN clinical trial and whether there was
On May 16th the U.S. Centers for Disease Control and Prevention (CDC) published a notice of request for public
The Director of Scientific & Medical Outreach at #MEAction, Jaime Seltzer, has partnered with Physician Scientist and Associate Professor
We are thrilled to see the press tell our story of the #MillionsMissing this year, and the #MillionsMore “long
#YouAreNotAlone now or ever. We are with you.
Scottish Action Alert! Use your voice to make a difference and respond to this goverment consultation.
#MEAction sent out a press release last week to alert media to the #MillionsMore developing ME following COVID-19. We
In light of this new evidence of exacerbation of ME from Covid-19, #MEAction UK have again written to Matt Hancock and Professor Stephen Powis to make them aware of the risk to people with ME in not being able to access the Covid-19 vaccine as a priority.
Read the first findings from the survey #MEAction UK and #MEAction Scotland are conducting with Action for ME to
Outreach to BIPOC communities has always been a challenge in ME/CFS. In a disease where diagnosis is so hard
We are thrilled to see that the ME/CFS Clinician Coalition has released recommendations for medical providers on specific tests and treatments to use for caring for people with ME/CFS.
This is an exciting opportunity to set research priorities for ME, and could be the next big step towards improvinging research funding in the UK.
Last November, I announced that I was stepping down as Executive Director to focus on my health and well-being. Since then, our entire Board of Directors have led a wide search for the right person to lead #MEAction into the future.
#MEAction is excited to share more work from the Writing from our ME Lives writing group!
We are excited to announce that #MillionsMissing t-shirts are now available for purchase along with other items in our
#MEAction has written an open letter to NIH institute director, Dr. Walter Koroshetz, and CDC division director Dr. Inger
Please help #MEAction UK and #MEAction Scotland by taking part in this survey to find out the effect that