The National Institutes of Health conference on myalgic encephalomyelitis (ME) research is fast approaching on April 4th-5th in Bethesda, MD, and #MEAction will be hosting a table to represent our community at the conference. We are looking for volunteers attending the conference who can help staff the table, which involves answering questions about #MEAction and
Last week, Dr. Mark Porter wrote an article in The Times under the headline, “Treatment for chronic fatigue syndrome is a complicated matter.” The following comments are intended as constructive criticism of that article, with the hope that they will help to further understanding of the issues he raised. Although I have focussed on my
The Workwell Foundation issued the press release below about its meta-analysis of 20 years of studies that shows “overwhelming evidence” of chronotropic incompetence in people with ME/CFS, which contributes to activity intolerance in people with myalgic encephalomyelitis (ME). A normal response to exercise is an increase in heart rate. Failure of the heart to keep pace with an
Last week was a difficult time for the ME community as we watched a few journalists deride and dismiss the medical concerns of an entire patient population: us, our friends, our families. Reuters is responsible for gaslighting millions of suffering people around the world. #MEAction has emailed a version of this letter to every
Today, exactly a year ago, a report by the Dutch Health council expressed the urgent message that immediate intervention is required regarding ME. And last December the current Minister of Medical Care, Bruno Bruins, stated that he would be following up on all accounts. As someone dealing with ME, I am eagerly awaiting the rest of this project, hoping to live a less restricted life.
After five years of advocacy leadership, Carol Head, the President of Solve ME/CFS (SMCI), will be stepping down from her position for health reasons. Head, a graduate of Wellesley and Stanford’s School of Business, contracted ME after a viral infection and was deeply affected for years. However, she describes herself as “95% recovered” and added
On March 13, Reuters published an article, “Special Report: Online activists are silencing us, scientists say“. Reuters used their platform to promote discredited, pseudoscientific treatments and to frame people with ME as violent activists. The article was also picked up in the New York Post, who re-published the content uncritically. #MEAction is urging the ME
This past Tuesday, March 12, Danish Health MPs unanimously agreed on a declaration that will recognise myalgic encephalomyelitis (ME) as a distinct disease, remove it from the “functional somatic syndromes” category, and promote the World Health Organization (WHO) diagnostic codes for ME. Parliament will vote on the declaration this Thursday, March 14th. The vote is
A recent study of Australian teenagers with chronic fatigue syndrome found CFS impacted their development of academic, cognitive and social skills. Students with CFS missed an average of 42% of classes over a term, 37% more than their healthy peers. The study recommends school staff be trained to understand chronic fatigue syndrome and its impact
‘Meet the Scientists’ is a series of interviews with researchers working on ME and chronic fatigue syndrome. We ask them about their current research and get to meet the people working to improve our health. The series introduces early career researchers through to interviewing scientists and clinicians who have been working on the problems for decades.
