Listen to the article: #MEAction’s Values & Policy initiative has evolved out of the need to better clarify our values, tactics and positions so that we are more unified in our work as a large, diverse community. As a first step, we asked the community last November to take a survey to indicate what
The National Institute for Health and Care Excellence (NICE) are updating their guidelines on ME. As part of this they have published a call for evidence about 3 topics. #MEAction UK has put together the following survey to provide further evidence for the committee. [maxbutton id=”22″ url=”https://forms.gle/ZXEdp7W5nW4KBBcu8″ text=”Take the survey” ] The survey asks
#MEAction advocate, Terri Wilder, and #MEAction board member, Ryan Prior, are co-presenting at the Stanford MEDx conference this weekend about how #MEAction empowers the myalgic encephalomyelitis (ME) community through technology. Terri and Ryan will discuss the history of #MEAction, its founders, its reason for being, its social justice philosophy, its policy goals, the PACE trial,
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
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
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
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
