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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

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 with myalgic encephalomyelitis (ME) and multiple other health issues. She dedicated much of her increasingly limited time and energy to advocacy, increased awareness, and increasing research funds for ME. She had

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 of myalgic encephalomyelitis (ME) became severe. She tried pushing through, but eventually had to return home to be cared for by her parents. Nowadays, she oscillates between accepting she may never

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 for a summit at the Bateman Horne Center to discuss diagnostic and treatment methods for ME/CFS. There were three major goals for the summit, including to summarize and publish on key

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) with holiday cards calling for NIH NINDS Director, Dr. Walter Koroshetz, to take immediate ACTIONS to end the crisis of myalgic encephalomyelitis (ME). We need your help! Take action with us:

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 – not to mention winter colds, increased heating bills, and challenges in local travel like snow and icy roads – it’s no wonder that many people emerge from the hazy shade of
#MEAction Dynamic Dashboard

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 and Care Excellence (NICE) releasing a call for evidence as they rewrite the ME guideline. Our full report from that survey found that ME/CFS services in the UK are not fit
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