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NICE guidelines suspended until further notice

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 to the Covid-19 pandemic, including their update of the ME/CFS guideline, originally due to be published October 2020 and recently delayed by NICE to December 2020. We support NICE’s aim to ...

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 today on Netflix. It's about building a community in spite of a world that excludes you; that often tries hard to deny your humanity or ignore your very existence. It's ...
APPG ME 2020 meeting March

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. Twenty MPs attended or sent staff to hear about the urgent need for biomedical research, following its inaugural AGM in January. Chaired by Carol Monaghan MP, the meeting was the first

Covid-19 #MillionsMissing Update

The situation of COVID-19 is rapidly changing. We wanted to be optimistic that this situation would improve for the better, but even in the last 48 hours the situation has dramatically shifted. The WHO is officially classifying the virus a pandemic. COVID-19 is now affecting more than 127,000 people worldwide. 

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 7th, at 1:00 Eastern Standard Time. The fear of the coronavirus is affecting many of our lives, but this webinar will focus on Lifesaving, practical tools and support for preparedness

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 United States! We’d like to take this opportunity to recognize one of #MEAction’s Postcards to Doctors amazing artists, Emily Lawton. After she was diagnosed with ME at the age of fifteen,
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
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