Taking BOLD ACTION with our press outreach has led to national media writing about ME. Nothing says BOLD ACTION like our press work. We are working daily to cultivate relationships with journalists and educate the press about ME, and we are seeing immense results. In the past few weeks alone,…
ANZMES President Fiona Charlton speaks to journalist Dewi Preece about the impact of ME/CFS in her life and the lives of many New Zealanders living with this debilitating illness, and why it is so important for ME/CFS to be recognised as a disability. Professor Warren Tate echos these sentiments, speaking…
Get Christmassy and creative however you like, whether it’s a drawing, painting, collage, photograph or even a cross-stitch. Your design can be of anything, as long as it fits within a Christmas theme. Check out last year’s winners for some inspiration! The winning designs will be turned into... This post…
In February 2022, a group of Members of the European Parliament (MEPs) headed by Pascal Arimont wrote several letters on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to the European Commission. This article provides an overview of the Commission’s response to these letters. The MEPs, who form the parliamentary interest group for…
Doctors’ attitudes to medical conditions. On an online medical forum physicians were found to discuss ME/CFS, depression and Lyme disease with more negative language than 21 other diseases. The results for ME/CFS included over 4 times more negative words than the results for depression. Doctors’ attitudes toward specific medical…
#MillionsMissing France has been busy. This month, in tandem with Adapted Physical Activity Expert Gilles Thöni, the association addressed the French National Authority for Health (HAS) requesting, as they have since 2020, that the HAS focus of aspects of their diagnostics policy on Post-Exertional Malaise (PEM), a hallmark symptom for…
Last week, two standout members of our community — Dr. Peter Rowe and Cynthia Adinig — participated in a satellite media tour (SMT) with 27 different TV and radio stations broadcasting to local audiences all over the United States. To date, the interviews have aired to an audience of nearly…
On 13 October 2022, the German Institute for Quality and Efficiency in Health Care (IQWiG) published its draft report on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This report was commissioned two years ago by the German government in part because of the European resolution on ME/CFS. The final report is thought…
Our Alliance continues to grow, and today we are announcing Millions Missing Belgique as our newest member. This organisation was born out of the Millions Missing movement founded and run by #MEAction. Belgium is divided into three political regions, based broadly on the language spoken. Millions Missing Belgique operates primarily…
Member Millions Missing Belgique is a voluntary organisation that advocates primarily in the French-speaking Wallonie region of Belgium, but works closely with colleagues across the country to ensure their advocacy work speaks to the needs of all. Founded in 2021 and run by a board of three members, it also…