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
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
Help advance biomarker research! The Bateman-Horne Center is actively recruiting patients and healthy controls who are eager to participate by providing samples and information. This is then used in ME/CFS and FM research to discover biomarkers, improve diagnosis, and advance treatment.
Suppose there was a substance that could help you, but before you learned about it, or you could find a doctor to prescribe it, the FDA banned it from the market, even though patients have successfully used it for decades. Or suppose there was a treatment that had helped your function improve from 40 percent
We want to honor volunteer Holly L. this month for her dedication to building an engaged, informed community for people with myalgic encephalomyelitis through her work managing the #MEAction TN Facebook Group, and the Pregnancy and Parenting with ME Facebook Group. Holly also works behind-the-scenes to keep the #MEAction Facebook page up-to-date with the latest science, policy, commentary, actions
Article written by Sian Leary and Nathalie Wright | Photo credit: Paula Peters On 22nd July, Deaf and Disabled people from around the world gathered in East London in solidarity to discuss countering oppression and coordinating resistance, especially in the light of austerity and the rise of the far right. Nathalie Wright from #MEAction Network
