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Tell your Doctor that GET is gone
The updated NICE guideline on ME/CFS contains substantial changes that alter the treatment and management of people with ME
In case You missed it!: Fall Roundup
Wow! So much has happened in the last three months. Between the historic change to the National Institute for
Read about the research happening on ME and long COVID
#MEAction summarized the scientific talks about ME/CFS and Long COVID presented at the International Association of Chronic Fatigue Syndrome
How the media reported on the UK’s new ME/CFS guideline
Media coverage of the publication of the new NICE guideline in the UK was impressive in its geographical spread
Get Germany to 50K signatures – Anyone Can Sign!
A team of ME/CFS advocates have launched a petition to raise awareness about the dire situation in Germany. Help
Send a message of thanks to NICE committee members
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
Final NICE ME/CFS guideline published – find out the big news!
The National Institute for Health and Care Excellence (NICE) has now published its ME/CFS guideline and we are delighted
Choose your top ten ME/CFS research priorities – UK survey launched
Take the survey The ME/CFS Priority Setting Partnership (PSP) is giving you the opportunity to define your top ten
Statement from Forward-ME on NICE Roundtable
After NICE held its roundtable to discuss the new ME/CFS guideline, Forward-ME (which #MEAction UK is a member of)
Is NIH blowing another opportunity to advance ME/CFS research?
Be sure to attend the telebriefing by the Trans-NIH ME/CFS Working Group this Friday (10/22) at 3PM ET. The
Stanford study (no longer enrolling)
Who: Ron Davis’s lab at Stanford University is conducting a functional microbiome study in collaboration with Harvard University and
“The treatment of ME has been Dickensian” – NICE’s roundtable on the ME/CFS guideline
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.”
A Response to New Yorker Article on Long COVID
A person with ME (who wishes to remain anonymous online) sent this letter to the author of The New Yorker
An update on the NICE roundtable from #MEAction UK
#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.
World ME Alliance Completes Major Name Change and Rebrand
#MEAction is proud to be a founding member of the World ME Alliance, a coalition of national ME/CFS organisations,
Sign petition To Fix ME/CFS tracking In US!
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the
NICE announces roundtable event to ensure implementation of ME/CFS guideline
NICE announced today that it will hold a roundtable in September as the next step in the publication of
#MEAction & 6 ME Orgs Call for CDC to Change How it Tracks ME/CFS
Together with six other organizations, we have submitted a proposal to the National Center for Health Statistics (NCHS) to
Where Does Your Donation Go?
Do you ever wonder where your money goes when donating to your favorite charity? We certainly do! Why? Because
Forward-ME : RESPONSE TO ‘PAUSE’ IN NEW NICE GUIDELINES
As part of the coalition Forward-ME, MEAction UK is pleased to share below, the latest statement from the group
Sign Our Petition: Publish the NICE ME/CFS Guideline Now.
We call on the National Institute for Health and Care Excellence (NICE) to publish the finalised ME/CFS guideline in
New Featured Pieces from #MEAction’s Writing from our ME Lives Group
#MEAction is excited to share new pieces of work from the Writing From Our ME Lives writing group. Click
Fury as NICE cancels publication of finalised ME/CFS guideline
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 Flawed CDC Review
Over 7K sign #MEAction’s response to CDC
Cancelled: Chat to NICE ME/CFS guideline committee members
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.
A Pause Before Severe ME Day 2021
Our community is fighting every day to bring hope, health and justice to people with myalgic encephalomyelitis (ME). In
Register for the IACFS/ME Conference
Join IACFS/ME, the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and people with ME, supporters, clinicians, and researchers for
Sign on to #MEAction’s response to flawed CDC review
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.
Severe ME Artists Project — Gallery
A collection of works by artists with severe ME.
Connecting Black People with ME and/or long Covid in the UK
Darren Randon, a poet, qualified teacher, community builder, facilitator, host and co-founder of Well Versed Ink from Thornton Heath,
#MEAction CA—Article & Interview Published in Medical Board of CA’s Newsletter
#MEAction CA’s advocacy work resulted in getting an article & interview published in Medical Board of CA’s newsletter!
Severe ME Artists Project
#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.
The #MEAction Community Making Waves in June!
There is so much going on in our wonderful community that we wanted to make sure you did not miss out on the latest successes, events, and updates! Take a look at #MEAction’s community round-up below.
TWO WEEKS TO SEND IN YOUR RESEARCH IDEAS
Help prioritise ME/CFS research by filling in this survey A major UK project is looking for your input. They
#MEAction Hosts an Artist’s Salon During #MillionsMissing
Activism comes in many forms, and #MEAction recognizes the significant role that art can play, not only as healing
CDC releases post-COVID guidance: 4 takeaways for ME/CFS
The U.S. Centers for Disease Control and Prevention (CDC) has published interim guidance for evaluating and caring for patients
Get caught up! Start with Cochrane Analysis: What’s Here, What’s Missing, Conclusions What has gone on before Cochrane Reviews
#MEAction Discussions with REGAIN Trial Clinicians Led to Staff Training on PEM
Earlier in 2021, concerns were raised by people with ME about the REGAIN clinical trial and whether there was
CDC releases flawed review of ME/CFS treatments for public comment
On May 16th the U.S. Centers for Disease Control and Prevention (CDC) published a notice of request for public
Celebrating #MEAction’s State Chapter’s wins
#MEAction State Chapters have been busy both locally and federally to continue the fight for ME & Long COVID
#MEAction Launches a SURVEY for People with ME/CFS and Other Chronic Diseases
The Director of Scientific & Medical Outreach at #MEAction, Jaime Seltzer, has partnered with Physician Scientist and Associate Professor
#MEAction urges Congress to hold NIH accountable
#MEAction has sent a letter to the Congressional House Subcommittee on Health (Energy & Commerce Committee), following their recent
Global media tells the story of the #Millionsmissing
We are thrilled to see the press tell our story of the #MillionsMissing this year, and the #MillionsMore “long
#MillionsMissing 2021 Was Inspiring! Watch the full Videos Here
#YouAreNotAlone now or ever. We are with you.
Respond to the Patient Safety Commissioner role consultation
Scottish Action Alert! Use your voice to make a difference and respond to this goverment consultation.
#MEAction Sends Press Release About #MillionsMissing
#MEAction sent out a press release last week to alert media to the #MillionsMore developing ME following COVID-19. We
Continuing pressure on NHS to vaccinate people with ME in light of survey results
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.
Covid-19 has worsened our ME, report survey respondents
Read the first findings from the survey #MEAction UK and #MEAction Scotland are conducting with Action for ME to
#MEAction’s BIPOC Clinical Outreach Group Reflects on a Year’s Work
Outreach to BIPOC communities has always been a challenge in ME/CFS. In a disease where diagnosis is so hard
ME/CFS Clinician Coalition Releases Recommendations for Tests & Treatments
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.
UK ME/CFS Priority Setting Partnership launches first survey
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.
TAKE ACTION TO GET THE PRESS WE DESERVE
Over the past year #MEAction has been focusing on reaching out to the national press to make sure journalists