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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 –
#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:
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.
Why We Must Build Coalitions to Strengthen our Movement
Values & Policy Initiative Learn more This article is part of our Values & Policy Initiative, a six-month long process
Inside / Outside Activism: Why We Must Shout in the Streets and Sit at the Table.
Values & Policy Initiative Learn more This article is part of our Values & Policy Initiative, a six-month long process
ME Activist Testifies before EU Parliament
Today Evelien Van Den Brink spoke powerfully and brilliantly to the Committee on Petitions in the European Parliament from
Colorado Activist Introduces Rotary Club Resolution for ME
Colorado activist, Jim Lutey, has introduced a Rotary Club resolution to encourage research, education and funding for myalgic encephalomyelitis
Cochrane Releases Problematic Review on ME/CFS
The revised Cochrane Review on ME/CFS was released today, October 2, 2019. We will share a more in-depth analysis
Postcards to Doctors returns!
Great news! Postcards to Doctors has relaunched as of today, October 1! You can now request new postcards and
Why Civil Disagreement and Respect are Essential to the ME Movement
VALUES & POLICY INITIATIVE Learn more This article is part of our Values & Policy Initiative, a six-month long process
Words from the Depths of Severe ME: Honoring the life of Rosie
Photo is of Rosie with her niece 10 years ago. Today we honor the life of Rosie Bayman who died
Why We Must Build an Open, Grassroots Movement
Listen to the article: Values & Policy Initiative Learn more This article is part of our Values & Policy
Join Our Values and Policy Initiative
Listen to the article: On behalf of #MEAction International’s board, staff, volunteers and everyone who form a part
Values & Policy: Outcome of our November Poll
Listen to the article: #MEAction’s Values & Policy initiative has evolved out of the need to better clarify
Your experience of ME/CFS services – Take the survey by #MEAction UK
The National Institute for Health and Care Excellence (NICE) are updating their guidelines on ME. As part of this
#MEAction Advocates will Speak at Stanford MEDx Conference this Weekend
#MEAction advocate, Terri Wilder, and #MEAction board member, Ryan Prior, are co-presenting at the Stanford MEDx conference this weekend
Brussels will Discuss EU Petition to Fund Biomedical Research for ME
Great news! Remember the petition that asks the EU to fund biomedical research on ME? It will be discussed
#MEAction Volunteer-of-the-Month: She’s been Fighting for Change for Four Decades
This month, #MEAction is honored to nominate Wilhelmina Jenkins as our Volunteer-of-the-Month. Wilhelmina has been fighting for recognition and
Patient Registry is the Key to Achieving Big Data for M.E.
We were excited to see #MEAction’s Director of Scientific and Medical Outreach, Jaime Seltzer, give a talk about “Big
NIH Working Group Releases Report on ME
Yesterday, the U.S. National Institutes of Health (NIH) published a report of the NANDS Council Working Group for ME/CFS
NICE Call for Evidence on ME guidelines
The National Institute for Health and Care Excellence (NICE) have put out a call for evidence in relation to
#MEAction’s Postcards to Doctors is an Unprecedented Success!
#MEAction’s Postcards to Doctors initiative has been successful beyond our wildest hopes! Since August 1, we’ve received requests for
NICE drag their feet on stopping the harm caused by GET and CBT
As part of our ongoing advocacy work, #MEAction UK has been campaigning for the National Institute for Clinical Excellence
UK fundraiser seeking your ME stories
Ellie Rushton, Birmingham UK, is setting out on a rather unique fundraising adventure. For the next six months (September
#MEAction Sends Letter to CDC Calling for Transparency and Progress
The U.S. Center for Disease Control and Prevention (CDC) has initiated various projects focused on myalgic encephalomyelitis / chronic
California Activists Fight for Centers of Excellence for ME
California advocates for myalgic encephalomyelitis (ME) are fighting for the state to institute a statewide Centers of Excellence program
Why people with ME need healthy allies
On Sunday 29th of September, my husband, David, and our daughter, Rosslyn, are taking part in the Great Scottish
Attend the 3rd Annual Community Symposium on Molecular Basis of ME/CFS – Register to Attend or Watch
Stanford University is holding its 3rd Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University on Saturday, Sept. 7,
#MEAction Welcomes our Social Media Ambassador from South Africa
We are excited to announce our newest Social Media Ambassador, Clarinda Viviers, from South Africa! A social media ambassador
U.S School Nurses, Teachers & Counselors can now take Continuing Education Course about Pediatric ME/CFS
School nurses, counselors, social workers or teachers in any U.S. state can now earn earn 3.25 Continuing Education credits (CNE) for