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
Listen to the article: We are thrilled to announce #MillionsMissing 2019! This May, we will take to the streets – or demonstrate from our beds – to show the world we are here, we are the #MillionsMissing, we will continue to fight for our demands for people with myalgic encephalomyelitis (ME). We’ve made important
2018 has been a big year at #MEAction! Thank you to all of you who have put forth immense efforts to improve the lives of people with myalgic encephalomyelitis (ME). #MEAction has grown over the past year in leaps and bounds, and we cannot wait to do more. We will not end our fight until all
As always, our community continues to amaze us with its tenacity, creativity, intellect, hard work and generosity. Enjoy a round-up of some of the community happenings these past few months where people with myalgic encephalomyelitis (ME) around the world continue to fight for recognition, treatment, care and dignity. Austria Austrian broadcast station @ATV aired a
* Nina E. Steinkopf is a ME patient activist and author of the blog www.melivet.com. The petition is addressed to the Norwegian Ministry of Health and Care Services and below is an English translation – for our international supporters. Everyone is encouraged to sign the petition. The management for the National Advisory Unit on CFS/ME must resign.
The impact of #MillionsMissing 2018 was phenomenal. Protestors took to the streets in 100 countries across the world with demonstrations taking place in North America, South America, Europe, the United Kingdom, South Africa and Asia. Along with people taking action from home, there was a total of 300 visibility actions. More than 50 news organizations ran
One of the frequent complaints of patients, researchers, and policymakers about ME research is that the findings are scattered, and the studies, small. One group will discover X is elevated in 20 ME patients, only to find that when the test is done on another 13 patients two years down the line, they don’t show
#MillionsMissing Crafts Competition We want to have fun while we work for equal treatment for ME sufferers! Win prizes! Submit photos and pattern of a crochet – or knitting project with the #MillionMissing logo. ( Also with a picture of the finished product). We pick three winners receiving a prize and they will be the designers behind #Millionsmissingnorway ‘s official patterns.
On ME Awareness day this year, 12th May, the London School of Hygiene and Tropical Medicine (LSHTM) opened the UK ME/CFS Biobank for business, with blood samples available from 300 patients now, and there will soon be samples for over 200 controls. The ready availability of samples for large numbers of well-characterised patients and controls
Want to get involved, but aren’t sure how to proceed? Here is a living document you can use to determine where protests are happening near you, how to register, and who to contact to learn about the #MillionsMissing protests happening around the world. Canada Elizabeth Sanchez and Scott Simpson : [email protected] Germany Daniel Hattesohl: [email protected]