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APPG on ME AGM

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 All-Party Parliamentary Group (APPG) on ME. This is a parliamentary initiative for which the ME Association will be providing secretariat support. The purpose of the APPG on ME is to seek ...

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 in 2000. She is the founder and Chief Medical Officer of the Bateman Horne Centre of Excellence (BHC) for ME/CFS and Fibromyalgia in Salt Lake City, Utah. In 2015, Dr. Bateman ...
Evelien Van Den Brink EU Petition

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 on ME! This is the first-ever resolution on ME in the EU and if adopted, this means a great leap forward towards our goal of attaining funding for biomedical research on
Take ME Seriously

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 recommendations that still stand in the existing guideline. Join us as we send them a giant card and tweet them so that they see the damage their guidelines have caused. Read

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 inspired MEAction to launch a virtual art and music concert called BedFest to showcase the artistic talent of the ME community, and also to explore the experience of having ME through

Celebrating Postcards to Doctors: Final Report

We're incredibly pleased to announce that we not only met but exceeded our initial goal of sending 6,000 postcards out into the world! And we could not have done it without you. As always, I am bowled over by our community's drive to fight for change. Check out our infographic

Charging Your Batteries

Ingebjørg Midsem Dahl has severe ME, and has written a book about pacing called, "Classic Pacing for a Better Life with ME." She attributes her slow but steady improvement from being severe to now only housebound to following her own advice on pacing, and from various medical treatments, such as
Petitions Committee meeting Scotland 2019

#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 petition, PE1690, which calls for a review of treatment of people with myalgic encephalomyelitis (ME) in Scotland. Appearing before the committee to give evidence were Jeane Freeman, the Scottish Government’s Cabinet

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. The article describes well the severity of ME, and the immense challenges our community faces, including lack of treatments, difficulty getting a diagnosis, skeptical doctors and a lack of knowledge about

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 person with myalgic encephalomyelitis (ME). Marcie died of sudden heart failure on Dec. 28, 2019. Marcie and her husband, Mark, founded the Neurocognitive Research Institute (NCRI), a non-profit that specializes in

#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 Chapters accomplished in 2019 for myalgic encephalomyelitis (ME). The tenacity and commitment of our state leaders and members is awe-inspiring. #MEAction Colorado introduced a resolution for ME before the Rotary Club

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 a huge victory for people with ME, Danish MPs unanimously agreed on a declaration that will recognise ME as a distinct disease, remove it from the “functional somatic syndromes” category, and
UK Parliament #MEAction UK

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 Parliamentary Group (APPG) on ME. After well attended Westminster Hall and House of Commons debates with cross-party support, Carol Monaghan MP has decided that it is time to re-establish this APPG.

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 Health (NIH)! As part of our Cards for Koroshetz Campaign, people with ME, caretakers and allies sent Dr. Koroshetz 500 holiday cards with their stories of living with a neglected and
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