The protest against the Danish physician, Per Fink, last week demonstrates how our community takes action in a variety of ways to fight for people with myalgic encephalomyelitis (ME). 1) #MEAction New York organized a protest outside the conference where Fink was presenting on his unscientific theory of Bodily Distress Syndrome, which includes ME and
Author: Adriane Tillman
We at #MEAction are so excited to welcome Erin Roediger as our new U.S. Advocacy Manager! We are thrilled that with Erin’s wealth of healthcare advocacy, volunteer coordination, and electoral campaign experience, we will be able to expand our congressional outreach program in concert with our partner organizations – the Solve ME/CFS Initiative and the
The Stanford Genome Technology Center will host the Second Annual Community Symposium on the Molecular Basis of ME/CFS, sponsored by the Open Medicine Foundation, at Stanford University on Saturday, Sept. 29. The following researchers will be presenting: Ronald W. Davis, PhD, Maureen Hanson, PhD, Jonas Bergquist, MD, PhD, Wenzhong Xiao, PhD, Alain Moreau, PhD, Ronald G.
The National Organization for Women (NOW) adopted a resolution for diseases and conditions affecting large numbers of women, including myalgic encephalomyelitis (ME), at its conference this past July. The resolution is now live on NOW’s website, read the full resolution below. The resolution recognizes the need to increase research funding, raise awareness and combat stigma for
#MEAction is thrilled to announce that we are supporting the work of two research assistants working on myalgic encephalomyelitis (ME) for one year as part of our inaugural #MEAction Young Researcher Fellowship. The goal of the fellowship is to grow the field by supporting aspiring research scientists early in their careers and connecting them with
This article was first published on Medium. We are some of the subjects of the recent Netflix docuseries, Afflicted. We were all told that we would be participating in a project that would show our lives and our struggles with illness through a “compassionate lens.” We participated because our diagnoses are misunderstood and stigmatized. We thought
Read a response from some of the subjects of Afflicted: “The Truth Behind Netflix’s ‘Afflicted.’” We anxiously awaited the release of Netflix’s docuseries, “Afflicted,” on Aug. 10 and are appalled by the dismissive, psychosomatic lens through which the patients are ultimately portrayed. The casting director had said that the “intention is to look at these experiences
At the National Organization for Women (NOW) conference held this past July, #MEAction’s co-founder and voluntary executive director, Jennifer Brea, was awarded the Victoria J. Mastrobuono Award for Women’s Health for her work championing the cause of people with myalgic encephalomyelitis through #MEAction, and her documentary film, Unrest. The award is given annually to a physician, researcher, health
Photo of the Caged Bird who writes about her experiences living with severe ME here. Today, August 8th, marks Severe Myalgic Encephalomyelitis (ME) Day of Understanding and Remembrance. It is a day to remember and honor the 25 percent of ME patients who are housebound or bedbound, and those who have passed away from ME.
The UC San Diego Smart WheelChair team is asking ME patients to fill out a short google questioner about how ME impacts their mobility and how they can best design a wheelchair accessory that would support your independence. The team of undergraduate engineering students are working to design an affordable, open source, voice activated accessory