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Category Archives: All News

#MEAction Volunteer-of-the-Month: She’s been Fighting for Change for Four Decades

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This month, #MEAction is honored to nominate Wilhelmina Jenkins as our Volunteer-of-the-Month. Wilhelmina has been fighting for recognition and progress for myalgic encephalomyelitis (ME) for nearly four decades since she suddenly became ill in 1983. She brings a wealth of knowledge, wisdom and fortitude to our community, and we are ...

Patient Registry is the Key to Achieving Big Data for M.E.

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We were excited to see #MEAction’s Director of Scientific and Medical Outreach, Jaime Seltzer, give a talk about “Big Data and myalgic encephalomyelitis (ME)” yesterday at Stanford University.  Researchers and clinicians have gathered at Stanford to discuss the latest and ongoing research into ME for the Third Annual Working Group Meeting ...

NIH Working Group Releases Report on ME

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Yesterday, the U.S. National Institutes of Health (NIH) published a report of the NANDS Council Working Group for ME/CFS research. #MEAction's NIH Committee (comprised of staff and volunteers) will take time to thoroughly review this report’s recommendations and issue a full response to the NIH. Read the NANDS report. In the meantime, we want ...
NICE Call for Evidence 2019

NICE Call for Evidence on ME guidelines

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The National Institute for Health and Care Excellence (NICE) have put out a call for evidence in relation to the ongoing update of their ME/CFS guidelines, due to be published in October 2020. This is an opportunity to ensure that all relevant information is held by the guideline development committee ...

#MEAction’s Postcards to Doctors is an Unprecedented Success!

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#MEAction’s Postcards to Doctors initiative has been successful beyond our wildest hopes!  Since August 1, we’ve received requests for more than 3,500 postcards from hundreds of individuals and groups.  People from all over the United States have signed up to write to their clinicians asking them to take #MEAction’s CME ...

NICE drag their feet on stopping the harm caused by GET and CBT

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As part of our ongoing advocacy work, #MEAction UK has been campaigning for the National Institute for Clinical Excellence (NICE) to update the current ME guidelines. Updated ME/CFS guidelines are due to be published in October 2020. However in the meantime, the existing guidelines published in August 2007 that recommend Cognitive ...

UK fundraiser seeking your ME stories

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Ellie Rushton, Birmingham UK, is setting out on a rather unique fundraising adventure. For the next six months (September to February) she will be attempting to do 1000 reps of bodyweight exercises every, single, day. Ambitious indeed! But what does it have to do with ME? “I had never heard of ME ...

#MEAction Sends Letter to CDC Calling for Transparency and Progress

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The U.S. Center for Disease Control and Prevention (CDC) has initiated various projects focused on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS), but there has been very little transparency or engagement with the patient community about the CDC's overall plans, the approaches being used, or the status of the projects ...

California Activists Fight for Centers of Excellence for ME

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California advocates for myalgic encephalomyelitis (ME) are fighting for the state to institute a statewide Centers of Excellence program that would train ME specialists, provide state-of-the-art treatment for people with ME, and undertake advanced research. Activists across the state have already met with 24 state legislators to discuss this initiative. Activist ...

Why people with ME need healthy allies

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On Sunday 29th of September, my husband, David, and our daughter, Rosslyn, are taking part in the Great Scottish Run 10K to raise money for #MEAction UK. As friends of #MEAction volunteer Emma Shorter and her family, David and Rosslyn have been aware of ME for some time but they’ve only ...