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The UK ME/CFS Biobank: a rich resource of samples and data
It is a strange time to be writing about the work of the UK ME/CFS Biobank (UKMEB); as I
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New ME education module available for healthcare professionals
A new education module designed to teach healthcare professionals about ME has been released. Send the new module to
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Washington Post Editorial Says Some COVID-19 Patients Will Develop ME
The Washington Post published an editorial last Saturday about how researchers are warning that COVID-19 may lead to long-term,
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Black Lives Matter.
George Floyd. Breonna Taylor. Ahmaud Arbery. Tony McDade. There is so much pain, suffering, grief, and anger across the
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When POC Can’t Get a Diagnosis, Go Unseen
For decades, myalgic encephalomyelitis (ME) – also commonly called chronic fatigue syndrome – was erroneously portrayed as a white
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#MillionsMissing 2020 was powerful (full report)!
*We added an update below. Videos like the “I got a virus” video from #MEAction UK and #MEAction Scotland
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#MillionsMissing Choir Sings
These singers, fighting everyday to live with the debilitating disease of Myalgic Encephalomyelitis, (ME) offer their love, support, and
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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
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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]
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#MillionsMissing: Artists & Storytellers
Over the years, we’ve seen incredible pieces of art from people with ME. Many of these artworks move us,
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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
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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
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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
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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,
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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
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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
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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
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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.
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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
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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
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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
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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.
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Covid-19 #MillionsMissing Update
The situation of COVID-19 is rapidly changing. We wanted to be optimistic that this situation would improve for the
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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
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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
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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
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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
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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
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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
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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
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Enrolling studies: Internet-Based Participation
What: Researchers at Southern Connecticut State University are currently enrolling individuals in a study that will examine an intervention
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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
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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
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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
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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
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Charging Your Batteries
Ingebjørg Midsem Dahl has severe ME, and has written a book about pacing called, “Classic Pacing for a Better
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#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
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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.
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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
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#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
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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
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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
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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
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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
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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
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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
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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)
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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 –
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#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
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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!
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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
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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
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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