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
Dr Ron Davis and his team at the Stanford Genome Technology Center have received a large research grant from the National Institutes of Health (NIH) that will fund research for 5 years at $500,000 a year and will involve 15 collaborators, 9 of which have never worked in the ME/CFS field before. The research will focus on
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″
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!
An anonymous testimony given before the Chronic Fatigue Syndrome Advisory Committee (CFSAC), which met last week 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. *Note, an anonymous person gave this testimony. #MEAction has published it but did not
This mother has participated in CFSAC meetings more than 20 times in an effort to get the Health and Human Services to take appropriate action to address this health crisis. Her two sons have suffered from severe Myalgic Encephalomyelitis for more than a decade. The photo was taken of her sons one month and one day before ME devastated
The Center for Solutions for ME/CFS is seeking applications for the Community Advisory Committee. The deadline is Monday, July 9. Apply here: CAC application, available in Google Forms. The Center for Solutions for ME/CFS (CfS for ME/CFS) is a multi-institutional, inter-disciplinary research center dedicated to understanding the biology of ME/CFS, and developing diagnostic tests and methods for
Most of Australia’s medical research funding for ME and CFS comes from the Mason Foundation, who are currently looking at whether they will fund a biobank or a patient registry for Myalgic Encephalomyelitis and/or chronic fatigue syndrome samples. Recently the Mason Foundation updated stakeholders on the decision-making process. This is important because if a biobank
Today was a turning of the tide for Myalgic Encephalomyelitis (ME) as 26 MPs attended a Westminster Hall debate on treatment and research for ME. MPs called for the immediate removal of Graded Exercise Therapy (GET) from the NICE guidelines, as patients have consistently reported being harmed from attempting to undergo this treatment. MP Ed Davey
