Listen to the article: On behalf of #MEAction International’s board, staff, volunteers and everyone who form a part of our wider community, I want to welcome and invite you to participate in what we are calling “Values and Policy,” an ambitious, six-month initiative to learn, engage, debate and ultimately devise the core tenets of
It Has Been A HUGE Week in the U.S.! This last week has been a bit of a whirlwind – we’ve never been busier! It’s been a week of advancing the cause of health equality for people with myalgic encephalomyelitis through the launch of the Unrest continuing medical education program and the expansion of our US advocacy team. It’s also
Hi everyone, I just wanted to take a moment to comment on some of the confusion and concern of these last few weeks and offer some steps forward to help clarify how #MEAction works, what our core value are, and how we plan to make concrete our policy positions going forward. We are not a
Canary in a Coal Mine (working title), my documentary film about myalgic encephalomyelitis, is heading toward rough cut, an early version of the finished film. Right now, we are working intensely on the historical sections to help the audience understand not only the history of the disease but a broader history of medicine. The intention is to give
What if we could take all of the information we have learned from all of those years of hundreds of people reading and writing about thousands of news and research articles across all of our forums and blogs and Facebook pages, and create one massive, interlinked, and structured knowledge base?
I have been looking at this tantalizing survey by the Autism Research Institute for a few years now. It aggregates 27,000 parents’ reports on the effects of pharmaceutical and alternative interventions on autistic children. It’s not a clinical trial or a substitute for doctors’ advice. It uses subjective, self-reported measures (which we all know are problematic). It’s
Canary in a Coal Mine at Good Pitch New York Dear friends, family and colleagues, This Tuesday, Canary – a documentary film about Myalgic Encephalomyelitis and Chronic Fatigue Syndrome – was one of seven film teams to present at Good Pitch New York, a gathering of foundations, NGOs, campaigners, philanthropists, policymakers, brands, technology, government, and media to forge
Canary in a Coal Mine will be one of seven films to take the stage at BRITDOC‘s Good Pitch New York on Tuesday, October 20th. It’s a unique, live event that leverages a diverse audience to help build movements and campaigns around social issue films. Good Pitch brings filmmakers together with foundations, NGOs, campaigners, philanthropists, policymakers, brands, technology, government, and media
Ampligen price more than doubling in the US? As many patients who are receiving Ampligen in the US already know, the price of Ampligen is set to dramatically increase. Two patients I spoke with today said the price would more than double from $75 a vial to $200 per bottle. At their current dosages, that would raise the
Juliet Chenery-Robson is a freelance photo-journalist and editor in the UK. She had to put aside her career and become a full time caretaker when her daughter developed ME at age 13. Robson has spent the past 10 years raising awareness for ME. She describes an all too familiar experience with doctors: [pullquote align=”full” cite=”” link=”” color=”#E7453A” class=””
