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Citizen science highlights non-recovery in COVID-19 patients
Recently, #MEAction received what may be the first, participant-led analysis of COVID-19, entitled What Does COVID-19 Recovery Actually Look
Researchers Say COVID-19 Will Lead to Surge in Chronic Illness, ME Sufferers Speak Out.
Researchers Say COVID-19 Will Lead to Surge in Chronic Illness, ME Sufferers Speak Out. FOR IMMEDIATE RELEASE:Contact: Adriane Tillman [email protected]
#MillionsMissing: Artists & Storytellers
Over the years, we’ve seen incredible pieces of art from people with ME. Many of these artworks move us,
Researchers Expect COVID-19 will Cause Surge of Chronic Illness, including ME
Since a new coronavirus emerged from Wuhan, China late in 2019, some 3.8 million cases and 265,000 deaths have
It’s #MillionsMissing Week!
It’s here. It’s #MillionsMissing week! Are you ready to gather allies, express your art, share your story, tune into some
Equip yourself to fight disinformation!
Over the last many months, social media platforms like Twitter, Facebook, and YouTube have been flooded with disinformation about COVID-19. We
DISCREDITED VIRUS RESEARCHER PUSHES CORONAVIRUS DISINFORMATION
FOR IMMEDIATE RELEASE Contact InfoLaurie [email protected] A new viral video claiming to be an excerpt from a forthcoming documentary,
1000 Reps a Day for #MEAction – Fundraiser success!
Ellie Rushton, from Birmingham UK, recently raised an amazing £1000 for #MEAction UK, by doing 1000 bodyweight reps every
Thousands add messages to 6m long card
In light of an oncoming wave of people experiencing post-viral complications and potentially post-viral ME, telling our story is
NIH announces two new funding opportunities for ME
On April 13, NIH announced two new funding opportunities for ME/CFS research: PAR-20-165, Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
We Are Essential Campaign
#MEAction is going to embark on a four week campaign, #WeAreEssential, asking Congress to recognize that the disability/chronic illness community is ESSENTIAL and must be included in the next Covid-19 packages.
NICE suspend work on new ME guidelines
The National Institute of Health and Care Excellence (NICE) have suspended work on all guidelines currently in development due
Saturday, March 28th: Crip Camp virtual screening and Q&A
At the Sundance Film Festival in January, I had the privilege of watching Crip Camp, a documentary film that premieres
Resources for parents with ME during COVID-19
Parents with ME have had to learn to be creative and flexible in their parenting.This will be key in
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