MEcfs Resources

I'm missing, but persistingThis 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

Center for Disease Control and Prevention guidelines

The clinician’s guide from IOM for ME/CFS

Solve ME/CFS Initiative (SMCI)

A “roadmap” for dx and treatment of ME

Symptoms from Stonebird, an advocacy group in the UK

ME Association Factsheet – What you need to know about M.E.

The UK ME/CFS association symptoms list

Info from former doctor with ME

Policies/guidelines from the Social Security Administration | PDF Document: Providing Medical Evidence for Individuals with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS)

Dr. David Tuller’s research blog

Open Medicine Foundation (OMF)

Dr. Myhill, ME doctor & researcher; Her Treatment Plan

Advocacy

#MEAction Network

American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society

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

A short ME film

 

*as of November 16, 2018

Whatcha think? Tell me, tell me!