This site is meant to be a resource for people with Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and people who think they might have it. It is here to help you navigate your experience, become better informed and to self advocate with medical professionals.
I am not a doctor, I am another person with ME/CFS, based in the USA.. I have collected the most reliable links and resources I could find (CDC, NIH, WHO, Stanford, NPR, etc.) and put them together along with my own experience of ME/CFS and what I have heard directly from others with ME/CFS. I do my best to cite everything here.
Any diagnosis and treatment must come from a medical professional.
If you are wondering whether you have ME/CFS, your first stop here is the symptoms page, but I also highly recommend Jennifer Brea's TED talk in the Podcasts and Videos section as a first stop.
CFS/ME is a not a rare disease, it is a severely under-diagnosed one. "According to an Institute of Medicine (IOM) report published in 2015, an estimated 836,000 to 2.5 million Americans suffer from ME/CFS, but most of them have not been diagnosed." (source: https://www.cdc.gov/me-cfs/index.html)
GREAT RESOURCES
How to Get On A self-advocacy guide for anyone who is homebound or bedbound in the US. Special focus on folks with Myalgic Encephalomyelitis
The American ME and CFS Society
ME Association (UK based)
They also run ME-PEDIA a database of all things related to ME
Solve ME is a non profit dedicated to finding treatments and a cure for ME
U.S. ME/CFS Clinician Coalition
The most useful activity scale I've found (The Hummingbird Scales)
Form to fill out and have handy for ER and Doctor Visits.
Guide to Caring for People with Severe/Very Severe ME
There are also various support groups on social media.
This page created by Mary Corey March. I do not have a contact here because too many responses would be overwhelming for me to handle.
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