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,
Simon McGrath is the author of the ME/CFS Research Review blog. The hallmark symptom of ME/CFS is post-exertional malaise (PEM), a prolonged, grim and disproportionate response to exertion. While Dr W. Ian Lipkin’s NIH-funded Collaborative – the Center for Solutions for ME/CFS – is focusing primarily on how problems in patients’ gut microbiomes might drive the
You may have watched your friend or relative struggle with myalgic encephalomyelitis (ME) unsure of what is happening or how you can help. #MEAction is supporting a new project called FFAME – Family, Friends and Allies for ME – to build a network of support for family, friends, caregivers and allies for ME to come
Author of the ME/CFS Research Review blog, Simon McGrath, has written an article about Dr W. Ian Lipkin’s theory that the body’s response to changes in the gut could be what’s driving ME/CFS for at least some patients. A gut reaction is the problem in ME/CFS – that’s the main idea being pursued by Dr W. Ian
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
July was a big month for scientific research in ME! Many of the most well-known researchers and clinicians had papers this month including Klimas, Lipkin, Hornig, Levin, Peterson, Montoya, Julie Newton, Broderick, and Marshall-Gradisnik. There were studies in epigenetics, NK cell function, the HPA axis, robots for schoolchildren with ME, and a few interesting critiques
By Moderator, Bob Gawron | Contributions by members, Linda Morganstern and Nancy K Wood Several months ago, I approached #MEAction and Jen Brea about creating a Facebook group for Seniors. The idea was enthusiastically received and the group was created. In a very short period of time we have grown to over 520 global members. This
