Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems.
For decades, “Chronic Fatigue Syndrome” was a diagnosis of exclusion, resulting in the delayed and misdiagnosis of countless patients. In 2015, the US National Academy of Medicine created new diagnostic criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (“the IOM criteria”) to affirmatively diagnose ME through a core set of symptoms including post-exertional malaise, unrefreshing sleep, cognitive dysfunction, and orthostatic intolerance.
While some clinicians and advocates believe the IOM criteria allow for the diagnosis of mild patients and patients earlier in their illness course, others are concerned that these criteria may still be too broad, particularly if used to select human subjects for research. We strongly recommend patients familiarize themselves with the following three criteria and the range of symptom presentations among mild, moderate and severe patients:
In addition to post-exertional malaise, unrefreshing sleep, cognitive dysfunction and/or orthostatic intolerance, many patients experience a range of other neurological, autonomic, and immunological symptoms either as a permanent feature of their illness or during a “crash” or flare. These symptoms include:
If you think you have ME, there are specialists around the world who can help you rule out other conditions, get an accurate diagnosis, and manage common comorbdities. Find a specialist near you using our global directory, crowdsourced from people with ME.
There are also numerous peer-to-peer and patient self-help resources in the form of online guides and forums. View our curated list of peer-to-peer treatment resources.
Check out our curated list of in-depth features, TV reports and seminal articles and essay on myalgic encephalomyelitis and chronic fatigue syndrome.
From in-depth investigative journalism to personal storytelling, these films, books, podcasts, and other media are a great way to learn more about the experience of living with ME
Living With ME| Pregnancy & Parenting with M.E. | Seniors | Men | Severe ME | 25 and Under | LGBTQ | #MEAction En Español | BedFest (community of artists with ME) | View all affinity groups on Facebook
#MEAction USA | #MEAction California | #MEAction New York | #MEAction Florida | #MEAction Canada | #MEAction UK |#MEAction Scotland | #MEAction Wales | #MEAction Northern Ireland | #MEAction London | #MEAction Network Australia | #MEAction New Zealand | View all local groups on Facebook
Make an appointment with our Community Organizer, Ben HsuBorger, to learn how to get connected to our community, find resources, discuss strategy for your advocacy work, and learn how #MEAction can help amplify your efforts. Sign up for a 15-minute appointment here.
There are so many ways to get involved in advocacy, whether it’s joining our annual #MillionsMissing events in May, supporting our Congressional or UK Parliament outreach, or by launching a petition to protest CBT/GET, or hosting an event or fundraiser.
While there are no FDA-approved treatments for ME, there are many off-label treatment options that people with ME have found helpful. Learn from other patients in the online forums below.