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
#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
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
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
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
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.
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
School nurses, counselors, social workers or teachers in any U.S. state can now earn earn 3.25 Continuing Education credits (CNE) for completing a course on pediatric myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). The course is titled, ““Why Can’t This Child Get to Class? Learn How ME/CFS Keeps Youth from Attending School.” The course features Dr, Peter Rowe,
Australian philanthropic trust the Mason Foundation will establish the first Australian national ME/CFS biobank and patient registry, with a $1 million grant. The grant consists of two components: the biobank and patient registry, and a research project which uses the samples stored in the biobank. This is significant news for the Australian ME/CFS community, and has been picked up by mainstream media.
Four cast members of the Netflix series, Afflicted, have filed a lawsuit against Netflix and Doc Shop producers for defamation for portraying them as ‘hypochondriacs and/or malingerers.” The lawsuit indicates that the Doc Shop producers lied to the Afflicted participants “because the series was not a documentary in any sense of the word, but a
