This is a non-comprehensive list of resources on Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome). I have included what I consider to be the top resources. Of course, there are lots of individual advocates (like myself), and lots of articles about patient stories, but for the sake of not making this any longer than it already is, I have not included all of them.
Research & science
Policies/guidelines from the Social Security Administration | PDF Document: Providing Medical Evidence for Individuals with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS)
A documentary called Unrest was released in 2017 about the disease. I’m “lucky” in that I don’t yet have it as severely as the woman who is the star/producer of the documentary, Jennifer Brea. She too was highly functioning, extremely smart… and was felled by this little-known disease.
- You can watch the 2 minute trailer
- The 17-minute TedTalk given by Jennifer Brea, the filmmaker
- If you are interested in purchasing and watching the documentary, links are on this page. The fee goes toward the cost of making the film, promotion, and all the outreach they are doing – including screenings all over the world!!! And training sessions with doctors and other medical providers.
- It is also available on Netflix
30-minute film, After Unrest
*as of November 16, 2018