Category: Featured news

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

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 incredibly grateful for her perseverance

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

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 on the Molecular Basis

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NIH Working Group Releases Report on ME

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 to share a

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

#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 program – we’ve sent out

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

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 Behavioral Therapy (CBT) and

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#MEAction Sends Letter to CDC Calling for Transparency and Progress

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 underway. Further, many of the

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California Activists Fight for Centers of Excellence for ME

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 and parent of a

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Attend the 3rd Annual Community Symposium on Molecular Basis of ME/CFS – Register to Attend or Watch

Stanford University is holding its 3rd Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University on Saturday, Sept. 7, 2019, sponsored by the Open Medicine Foundation. Patients, caregivers and the community are encouraged to join the community symposium to learn about the most current research, and to meet the scientists and clinicians in person. Registration closes on Aug.

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#MEAction Welcomes our Social Media Ambassador from South Africa

We are excited to announce our newest Social Media Ambassador, Clarinda Viviers, from South Africa! A social media ambassador is a volunteer who is knowledgeable, an enthusiastic supporter of the ME community and #MEAction, and has a strong social media presence. Each ambassador amplifies #MEAction’s social media efforts and share news with #MEAction’s social media

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