Category: Advocacy

Members of the All Party Parliamentary Group

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 to improve health, social care, education

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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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Three members seated and speaking at the Public Petitions Committee Meeting

#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 Secretary for Health and Sport,

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Parliament Sqaure road sign

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.  The first meeting will be

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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 shunned disease. They told Dr. Koroshetz

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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 accomplish her life goals––finish her

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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: Send Dr Koroshetz a holiday

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