#MEAction, Author at #MEAction Network

#MEAction Advocates will Speak at Stanford MEDx Conference this Weekend

September 21, 2019 1 Comment

#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,

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

September 5, 2019 No Comments

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

NIH Working Group Releases Report on ME

September 4, 2019 1 Comment

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

NICE Call for Evidence on ME guidelines

September 3, 2019 No Comments

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

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

August 27, 2019 No Comments

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

UK fundraiser seeking your ME stories

August 27, 2019 No Comments

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

#MEAction Sends Letter to CDC Calling for Transparency and Progress

August 27, 2019 No Comments

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 Activists Fight for Centers of Excellence for ME

August 27, 2019 No Comments

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

U.S School Nurses, Teachers & Counselors can now take Continuing Education Course about Pediatric ME/CFS

August 16, 2019 No Comments

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,

Greater London Authority Unrest screenings to raise awareness of ME

August 16, 2019 No Comments

The Greater London Authority’s offices have held two Unrest screenings over the past few months to raise awareness of myalgic encephalomyelitis (ME). The screenings, held for staff, took place at Union Street and City Hall, and were part of ME Awareness Week and the #MillionsMissing campaign. Officers and staffers attended the two screenings, held in

Author: #MEAction