Category: Advocacy

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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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 for purpose. Results identified that

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Host a Postcards to Doctors party this holiday season!

Host a Postcards to Doctors party this holiday season! And announcing: #MEAction’s first Pinterest boards! Together, the #MEAction community has made the Postcards to Doctors initiative an incredible success: there have been approximately 5,500 requests for postcards to doctors across 43 states! We are so thankful to see people across the country step up to

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NIH: Dr. Koroshetz Declines to Take Urgent Action for ME. Read His Response and Take Action!

NINDS Institute director, Dr. Walter Koroshetz, has made it clear that neither he nor the National Institutes of Health (NIH) are ready to take the immediate actions needed to address the crisis of myalgic encephalomyelitis (ME).  In response to #MEAction’s recent letter calling on the NIH to ACTION now for ME, Dr. Koroshetz responded with bureaucratic excuses

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Postcards to Doctors Featured Artist: Lia Pas

#MEAction’s Postcards to Doctors initiative has continued to be an incredible success! Thanks to the hard work of the #MEAction community we have sent postcards to nearly 6,000 clinicians across the United States. We could not have done this without the invaluable contributions from the artists who designed our postcards.   #MEAction would like to

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UK General Election Guide Now Available

The UK is set to go to the polls on 12 December 2019. #MEAction UK has prepared a guide ahead of the General Election with information on how to register for voting, different ways of voting (postal, proxy, etc), information about candidates and tips on raising awareness about myalgic encephalomyelitis (ME) with candidates. Make your

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Evelien’s Journey to Meet the EU Parliament

Hi everyone! First of all I would like to express my heartfelt thanks to all who contributed to the success of the petition that asks for the EU to fund biomedical research on ME. So many people helped out by writing to their MEPs, translating documents, making phone calls, sharing the news and signing the

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