On June 3rd the CDC held its latest MECFS Stakeholder Engagement and Communication (SEC) Webinar/Conference Call with the ME community. The need for change in the CDC’s stakeholder engagement meetings has been a long time coming. However, this Monday, the majority of the call was a presentation comprised of simple lifestyle advice for ME, including
Jack Croxall is an author, scriptwriter and blogger living in Nottinghamshire, UK. He fights ME both in life and in prose. Follow him on Twitter, on his blog, and view his books. When you’re dealing with the symptoms of ME every minute of every day, it’s obviously difficult to forget that you’re sick. But I
We asked you, the #MillionsMissing from ME to tell us your stories. We are grateful for all that you’ve shared with us and each other. We are proud to publish your words. We won’t give up the fight. Here is the collection of your stories from 2019. *We tried our best to include all of
Myalgic encephalomyelitis (ME) is a debilitating, chronic disease that steals so much from the person. We received heart felt stories from around the globe chronicling journeys with ME. This week we touched on parenting, aging, marginalization, and careers. Today we want to share more of your stories. While not all of these stories fit into
Aging can be a challenging time for anyone but people with the debilitating, chronic disease of myalgic encephalomyelitis (ME) often find that their symptoms are dismissed as a “normal” part of aging, and so are left without the diagnosis, care and support that they need from their medical providers and community to manage and treat a
On Thursday 18th April, #MEAction UK held a conference call with organisers of #MillionsMissing event past and present from across the UK. There are already events planned for 2019 in all 12 UK regions, with over 25 events in the UK Claire from Southampton, Janet from Edinburgh, Carolyn from Sheffield and Denise from London were
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
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
