#MEAction advocate, Terri Wilder, and #MEAction board member, Ryan Prior, are co-presenting at the Stanford MEDx conference this weekend about how...
Apart from helping to guide NICE guidelines development & the Nina Muirhead higher education work The new physio professionals group Is...
Moderator note: This discussion has been moved from this thread: Concerns about craniocervical instability surgery in ME/CFS [MEDIA] [MEDIA]
Many who suffer from chronic complex diseases are often met with disbelief from family and physicians leading to isolation, grief, and even...
Australia: International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) including myalgic encephalomyelitis (ME) /...
I'm putting this in the members-only section because I was advised to keep it quiet until it's published (besides posting this here, of course)....
Hi, I have everything ready for the Sunday Millions Missing event except one item. I want to create a poster to put up near our table. I ended...
Abstract In the 1980s and 1990s, single-disease interest groups emerged as an influential force in U.S. politics. This article explores their...
My husband and I are planning a small #MillionsMissing event at our local library in Beaverton, Oregon. We plan to set up a small table in front...
You may recall when ME Action Network started there were mentions of ACT UP. This was the campaign in the 1980s by the LGBT community to get more...
I hope I’m not duplicating a thread - I’ve searched but can’t find anything on this subject. “On April 9, 2019, ME advocates Eileen Holderman and...
I've been following the microbiome literature daily for 4+ years while cataloging it all into this wiki:...
Most of us are not able to go to Washington, DC for this advocacy week. But there are still ways to make your voices heard! Today I called both...
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...
Spotted this on social media. HMD has noted a “paucity of research” on ME/CFS and that “more research is essential”; only 1% of the needed funding...
The U.S. National Academy of Medicine (NAM) is holding a contest for young people (ages 5 to 26) to submit art, music, writing, videos, dance,...
Introduction I started writing this blog in 2012. For several years since then, I have kept starting drafts on a particular topic, only to then...
Moderator note: We've merged a number of threads to collect Naomi's blog posts into one thread. An article originally printed December 2016 but...
This was me wearing the symptom suit, an outfit designed by members of the Pembrokeshire Charity CWTCH. I was taking on the ‘walk a mile in my...
This Christmas, millions will be missing from parties and celebrations, because of the severity of ME. Yet the National Institute of Health and...
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