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 as they work to assess
#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
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 until I met
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
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 relatively recently gained 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,
