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APPG on ME: Biomedical Research Meeting
The All-Party Parliamentary Group (APPG) on ME held its first meeting on March 3, where biomedical research was discussed.
Covid-19 #MillionsMissing Update
The situation of COVID-19 is rapidly changing. We wanted to be optimistic that this situation would improve for the
Send your stories for London #MillionsMissing
Exciting News for 2020! #MillionsMissing London is in Parliament Square on 13th May. London will play host to a
Invite your Doctor to learn about ME – Medical Education Event in London
March 11 Update: After thoughtful deliberation, we have made the difficult but necessary decision to postpone our Medical Education
ME/CFS Protesters Interrupt House Appropriations Hearing
ME/CFS Protesters Interrupt House Appropriations Hearing FOR IMMEDIATE RELEASE:Contact: Adriane Tillman [email protected] Today, #MEAction protesters wearing red #millionsmissing t-shirts interrupted NIH Director
Sign-up to Attend a Webinar for COVID-19 (Coronavirus) Preparation for people with Chronic Illnesses in the U.S.
The Cranky Queer Guide to Chronic Illness and #MEAction are co-sponsoring a webinar on COVID-19 (Coronavirus) prep, this Saturday March
Postcards to Doctors Featured Artist: Emily Lawton
We are so excited that the Postcards to Doctors Initiative sent more than 6,000 postcards to physicians across the
Next Steps for the APPG on ME in the UK
#MEAction and the ME Association are both delighted that Carol Monaghan (MP for Glasgow North-West) has re-established a new
Meet the Scientist: Interview with Dr. Lucinda Bateman
Dr. Lucinda Bateman has treated over a thousand patients with chronic fatigue conditions since starting the Fatigue Consultation Clinic
Enrolling studies: Internet-Based Participation
What: Researchers at Southern Connecticut State University are currently enrolling individuals in a study that will examine an intervention
The EU Committee on Petitions is preparing a resolution on ME
Hi everyone! Time for an update: We have super important news! The Committee on Petitions is preparing a resolution
Another No from NICE – Take ME Seriously
As publication of new ME guidelines are delayed, NICE once again refuse to take action to mitigate the harmful
Musician with ME Releases Album, ‘The Canary Collective’
#MEAction sat down for an interview to catch up with songwriter and ME activist Kaeley Pruitt-Hamm, who in 2017
Celebrating Postcards to Doctors: Final Report
This article references the 2019 Postcards to Doctors initiative. Find the page for Postcards to Doctors 2020 here. We’re
Charging Your Batteries
Ingebjørg Midsem Dahl has severe ME, and has written a book about pacing called, “Classic Pacing for a Better
#MEAction Scotland’s Petition: Progress Continues
On Thursday 19th December, 2019 the Scottish Parliament’s Public Petitions Committee met to continue its consideration of #MEAction Scotland’s
NIH Neglect is a Key Reason for the ME/CFS Crisis
The Associated Press published a syndicated article last week profiling a study being done by the NIH on ME/CFS.
Marcie Zinn was a Force for ME
We are deeply saddened by the sudden death of Marcie Zinn, PhD, who was a dedicated researcher, advocate and
#MEAction State Chapters are Trailblazing Change for ME across the United States
As we enter into 2020, we want to take a moment to recognize all the hard work our State
Danish Health Authority Refuses to Recognize WHO Definition for ME
The fight continues in Denmark for proper recognition and care for people with myalgic encephalomyelitis (ME). Last March in
New APPG on ME for the UK – Meeting
Following the success of the last parliamentary debates on myalgic encephalomyelitis (ME), Carol Monaghan MP is reviving the All-Party
NIH Receives Surprise Holiday Gift from ME Community
It was a big holiday season for Dr. Walter Koroshetz who oversees ME/CFS research at the National Institutes of
We Celebrate the Life and Legacy of a Warrior for ME
It is with heavy hearts that we share the passing of ME community advocate, Cindy Siegel Shepler. Cindy lived
Why Claudia Carrera is Fighting for ME Research
Claudia Carrera, 35, was halfway through her graduate program in musicology at New York University when her mild symptoms
Why U.S. ME/CFS Clinician Coalition Uses IOM Criteria to Educate Clinicians
A year and a half ago in March of 2018, many of the leading U.S. ME/CFS clinicians came together
Cards for Koroshetz: Send a Holiday Card to NIH Demanding Action!
This holiday season, the #MEAction community plans to flood the mailbox of the U.S. National Institutes of Health (NIH)
Your #MEAction guide to the holidays: with Pinboards!
The holidays are a stressful time. Between gift-giving (and buying), travel, cooking, decorating, and guests in the home –
#MEAction’s Guide to Weathering the Holidays
Note: if you prefer to download this list as a pdf you can download it by clicking here. Make
NeuroCognitive Research Institute is Back in Business, Assessing People with ME!
Mark and Marcie Zinn are once again conducting assessments and producing elaborate reports to help patients!
How did your local ME service perform?
Earlier this year #MEAction UK wrote, distributed and analysed a survey in response to The National Institute for Health
WHY WE CARE: Directly Supporting People with ME
Erica Verrillo is founder of The American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society (AMMES), which provides direct assistance
Host a Postcards to Doctors party this holiday season!
Host a Postcards to Doctors party this holiday season! And announcing: #MEAction’s first Pinterest boards! Together, the #MEAction community
Diagnostic Criteria: Researchers and Clinicians Survey Results
Last month, we presented information about the diagnostic criteria, exploring their similarities and differences. Click here to read that article.
A Trial of ME – Elizabeth’s Story
This is me, my story, I am one of the millions missing. I may not look ill to you,
NIH: Dr. Koroshetz Declines to Take Urgent Action for ME. Read His Response and Take Action!
NINDS Institute director, Dr. Walter Koroshetz, has made it clear that neither he nor the National Institutes of Health
Read Dr. Koroshetz Response to Our Letter Calling for Action. We Analyze His Claims.
NINDS director, Dr. Walter Koroshetz, sent the following response to #MEAction’s Oct. 21st letter calling on the NIH to take immediate
Postcards to Doctors Featured Artist: Lia Pas
#MEAction’s Postcards to Doctors initiative has continued to be an incredible success! Thanks to the hard work of the
#MEAction Blue Ribbon Fellowship Opens at Bateman Horne
Bateman Horne center is re-opening applications for the #MEAction Blue Ribbon Clerkship. Please read below, the application has changed.
Demystifying the Diagnostic Criteria for ME and Related disease
Additions and corrections Initially we stated that ICC requires three months before diagnosis; this was in error. ICC
UK General Election Guide Now Available
The UK is set to go to the polls on 12 December 2019. #MEAction UK has prepared a guide
We Remember and Honor the Life of Heather Colman-McGill
Our dear community, Let us take a moment to gather together and comfort one another. We are saddened to
Meet the Scientist: Dr. Dane Cook
Dane Cook is Professor of Kinesiology at the University of Wisconsin and Director of the March Center for Research
#MEAction U.S. State Chapters have a BIG Vision for ME! Find Out What is Happening in Your State.
#MEAction is fighting to end the crisis of myalgic encephalomyelitis (ME) and create an equitable world for people with
NOT ENOUGH! Sign the Petition Calling on the NIH to Take REAL Action for ME!
Not. Enough. Those are the two words the National Institutes of Health (NIH) needs to hear from all of us about
Evelien’s Journey to Meet the EU Parliament
Hi everyone! First of all I would like to express my heartfelt thanks to all who contributed to the
ME Services in the UK Not Fit for Purpose
A recent survey conducted by #MEAction UK found that UK specialist myalgic encephalomyelitis (ME) services are not fit for
NICE Called for Evidence: Read #MEAction UK’s Response
The National Institute for Health and Care Excellence (NICE) are re-writing their guidelines on ME. As part of this
Degrees of Distance
Many of us (housebound/bedbound) worry about dear ones who are sick, infirm, or struggling, esp. if we live afar. We feel not being there when we need to be, want to be, no matter what the circumstances, as failed fidelity, incurring a debt of love.
Race, Ethnicity and M.E.: Why We Need to Build a More Inclusive Movement and Why it Matters.
Values & Policy Initiative Learn more This article is part of our Values & Policy Initiative, a six-month long process
Status Update On #MEAction’s Congressional Work
#MEAction’s Congressional Committee team has been very busy this year. We want to give you a status update and
Cochrane Analysis: What’s Here, What’s missing, Conclusions
Exercise therapy for chronic fatigue syndrome Lillebeth Larun, Kjetil G Brurberg, Jan Odgaard-Jensen, and Jonathan R Price Editorial group:
Join #MEAction’s Board of Directors
#MEAction is building a global movement to fight for recognition, education and research so that one day, all people
Are you Disabled? How does ME fit into the Disabled People’s Movement?
Values & Policy Initiative Learn more This article is part of our Values & Policy Initiative, a six-month long process
Volunteer of the Month: An Ally of Many Talents
Malcolm Bailey from the UK has bailed us out with his tech savvy skills on more than one occasion.