#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
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 /
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
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.
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
Update: #MEAction has incorporated your comments in its draft to the CDC! See what we’ve added from the comments below by clicking on the updated version of the article by clicking here: CDC website article text. Community-based changes to our recommendations are in red ink. In September 2016, I attended a meeting at the Centers for
The National Institute for Health and Care Excellence (NICE) is in the process of updating its guideline for Myalgic Encephalomyelitis by October 2020. #MEAction UK has issued a response to the second draft scope for the ME/CFS Guideline. The scope is a document which will provide the framework for the new guidelines; providing feedback about
#MEAction sent two representatives, Beth Mazur and Jaime Seltzer, to attend the 2018 Dysautonomia International Conference in Nashville last month. This was an opportunity for our community to join forces and gain insight regarding the commonalities in triggers, symptoms, diagnoses, and methods of treatment between ME and dysautonomia. Dysautonomia refers to diseases that affect the
75 clinicians, scientists and other professionals explain to the Dutch Minister of Health what this diseas is, but also is NOT (not a pychological or psychosomatic disease), that there is no robust evidence for CBT/GET nor for the underlying hypothesis and that the only way to achieve much needed progress for patients is biomedical research
Article written by Rebecca Hansen, Chairman of the Danish ME Association The Danish Health Authority (SST) released their new treatment recommendations for Myalgic Encephalomyelitis (ME) patients on June 18 as part of a guideline called “Physical Training as Treatment.” The chapter on ME is nothing short of medical abuse. It defines ME as fatigue and states that
