Since its inception three years ago, the #MEAction Congressional team has worked hard to build relationships with members of Congress in order to gain their support for investing in biomedical research and clinical care for myalgic encephalomyelitis. Now, the Congress team has created a comprehensive manual for activists who want to gain more knowledge about
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
This past May, the Women’s Health Empowerment Summit chose three patients to share testimonies about their illness and Myalgic Encephalomyelitis was chosen as one of the three! PwME Kat Fox discusses her experience participating at the summit. How did you get the opportunity to speak at the Women’s Health Empowerment Summit? Well, for that we have to
#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
Following the global day of action on May 12, 2018, #MEAction gathered photos and petition signatures from people all over the world and mailed it to Director of the NIH, Francis Collins (see letter). Along with your beautiful photos and anecdotes, we delivered a list of demands, including a meeting with #MEAction. We also asked
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
Lutheran pastor, Stephen Friedrich, spoke about his wife’s struggle with Myalgic Encephalomyelitis before the Chronic Fatigue Syndrome Advisory Committee (CFSAC) hearing on June 20th. CFSAC met for its bi-annual meeting to discuss recommendations to make to the Secretary of Health and Human Services (HHS) on issues related to Myalgic Encephalomyelitis and chronic fatigue syndrome. [maxbutton id=”18″
Parliament Plays NICE #MEAction UK was thrilled to watch the longest ever UK parliamentary debate about ME on 21st June, after working so hard alongside so many others to make it happen. The three hour debate in Westminster Hall about treatment and research reflected a seismic shift in political understanding of ME. It was an
This month we want to honor the work of three women with #MEAction Scotland – Emma Shorter, Kim Gurav and Janet Sylvester – who have done an incredible job advocating for people with myalgic encephalomyelitis. The partnership began last January when Kim and Janet wanted to organise a screening of Unrest, which – long story short!
