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Missing No More: Improving the Lives of People with ME and CFS

April 12, 2019 No Comments

Senator Jordon Steele-John has announced the Australian Greens’ policy on Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS), planning to commit $15 million to biomedical research, a national summit, better access to the National Disability Insurance Scheme (NDIS) and money for advocacy organisations. This policy is welcomed by the ME and CFS community in Australia. The Australian Greens

Celebrating Our Wins for ME!

April 11, 2019 No Comments

It has been been an exciting time for the myalgic encephalomyelitis (ME) community these past few weeks. We are in awe of the sacrifices and hard work people with ME and their allies have made to make their voices heard. #MEAction and the Solve ME/CFS Initiative organized the largest Advocacy Day ever with more than 200

CBT and GET survey results published by Forward-ME Group

April 3, 2019 No Comments

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

GET and CBT are not safe for ME – summary of survey results

April 3, 2019 2 Comments

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

A response to Dr. Mark Porter’s article about ME in The Times

March 25, 2019 1 Comment

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

Meta-Analysis Shows Blunted Heart Rate Contributes to Activity Intolerance in People with ME

March 23, 2019 No Comments

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

Our Community will Not Suffer Stigma and Distortion

March 23, 2019 No Comments

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

Fighting for Rigorous Science and Accurate Reporting

March 14, 2019 1 Comment

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

Denmark: MPs will Vote whether to Recognise ME as WHO-defined disease!

March 13, 2019 No Comments

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

Enrolling: NIH Intramural Study

March 12, 2019 No Comments

Overview The objective of this research study is to look in-depth at the clinical and biological characteristics of ME/CFS. Participants with ME/CFS are inpatients at the clinical center at NIH for approximately two weeks on their first visit and another two weeks if they return for the second round of the study. There will be

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