Category: Actions

Take action: graded exercise harming people with ME and COVID long haulers

#MEAction UK has sent an open letter to Matt Hancock asking him to recognise the harm caused by graded exercise therapy. We are calling on him to ensure all advice for people with ME, and those at risk of developing ME post-COVID, warns of the harm from graded exercise therapy. Join us by asking your MP to write to Matt Hancock too and telling them about your experience of ME.

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National Disability Voter Registration Week

National Disability Voter Registration WeekJuly 13-17, 2020 #MEAction is excited to participate in National Disability Voter Registration Week!  Let’s get people with ME and all people with disabilities registered to vote, educated about this year’s election, and prepared to cast our ballots! We have gathered resources to help make it as simple as possible as

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#MEAction Supports Health Care at Home Act

#MEAction is excited to announce our support of the Health Care at Home Act, which increases telemedicine opportunities during the pandemic. Telemedicine enables people with myalgic encephalomyelitis (ME) to access their healthcare professionals without leaving home, which can mean the difference between being able to access a doctor or not for some people with ME.

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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 write, our office has been closed for over two months and clinical visits have been paused indefinitely; samples cannot currently be distributed. COVID-19 has created many challenges to our work and the research of many others,

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Evelien Van Den Brink laying down, hopefully and clearly looking at the camera.

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 ME.  It is planned to

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APPG on ME Sample Email UK

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 more below and take action.

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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 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

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