What A Day… ME Advocacy Day 2019 was a huge success! #MEAction and Solve ME/CFS Initiative were very excited to partner for this year’s Advocacy Day and we were blown away by everyone’s response and involvement. With over 200+ people registered to attend in person and even more of you taking action from home, we
In January 2019, a survey investigating the impact of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for people with ME, CFS or PVFS diagnoses in the UK was made available online. It was intended to provide up-to-date data on the impact these therapies have had on people who have been offered or received
Listen to the recording: #MEAction UK Lay Summary of the 2019 Forward ME Group CBT & GET Survey Topline findings A new patient survey of 2274 respondents has confirmed that graded exercise therapy (GET) is harming a large majority of people with ME receiving this treatment in the UK. A majority of people with ME
One of our goals for #MillionsMissing is to tell our story of myalgic encephalomyelitis (ME) to the world. Since 2016, we have been collecting stories of people missing from their lives due to ME, which we display at demonstrations around the world, and circulate on social media. We are collecting short personal stories again this year
Erica Verrillo is President of the American ME and CFS Society (AMMES) When I was a child, my mother taught me the three basics of human survival: Food, clothing, and shelter. These, she said, are essential for our existence. At the time, I understood food to be essential, and possibly shelter, but I did not
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
Australia’s Health Minister Greg Hunt has today announced $3M for research into ME/CFS. Minister Hunt notes that “funding will be provided through the National Health and Medical Research Council (NHMRC) to help researchers develop a better understanding of the cause and condition of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Diagnosis of ME/CFS is difficult, with no diagnostic test and a diverse range of symptoms. Research will drive a better understanding of the condition along with its causes and the mechanisms that lead to its debilitating symptoms.”
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
