The persistent dedication of our community to fight for our lives continues to yield results. We are pleased to announce #MEAction has secured a meeting with Dr. Francis Collins, Director of the National Institutes of Health (NIH), to discuss the demands our community sent to him in a letter this past May. We are working
August was a mixed month in the world of ME research, with some truly innovative studies coming out and a few that needed another couple of rounds with the thesis advisor. Some great books and book chapters debuted — and we faced Afflicted, battling not only the usual stigma, but the directors’ framing of chronically ill patients
It has been a hot summer for many around the world, and another month of courage, resilience and bravery as people with ME continue to demand equitable research, treatments and respect. We continue to fight against harmful treatments and stigma worsening the health of everyone from the newly diagnosed to those who have lived with
Twenty-year-old, Linda, from Sweden shares her story about getting ME at the age of 4, living with a mild version of it, which has since turned severe. Originally posted on #MillionsMissing Sweden’s Facebook page. Isolated from the outside world, stuck in-between four walls, trapped in the prison of my own body… I was only 17
It has been another active month in our community! A few major items to share: Family, Friends and Allies for ME #MEAction is supporting a new project to build a support network for healthy allies called FFAME – Family, Friends and Allies for ME. FFAME aims to support family, friends, caregivers and allies of people with
We are so thankful for the dedicated work that healthy ally, Shelley Krause, has given to the ME community. For the past three years, Shelley has kept the community informed and updated on issues affecting people with ME through the #MEAction twitter stream. Shelley first made a connection to ME as a fan of the
#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
If you have been diagnosed with mast cell activation syndrome (MCAS), please take a minute to fill out this anonymous survey. The Mastocytosis Society will use data from the survey in its presentations at a National Institutes of Health (NIH) workshop on MCAS in early September. This survey is only open until Saturday, August 25th at 10p.m. EDT /
Artwork by Elizabeth D’Angelo, who has severe ME. View, purchase and commission her artwork here. People can be infuriating. People can tell you that you are wrong about your own experience. That if only you were braver, bolder, cleverer, or otherwise different you’d be more. Whether the more they have in mind is more well,
