“A diagnosis by exclusion is not a diagnosis.” -Dr. John Sarno, MD
Myalgic encephalomyelitis, or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic illness characterized primarily by extreme and debilitating fatigue and widespread physical pain. According to the Mayo Clinic, “evidence suggests that problems generating and using the main energy molecule, adenosine triphosphate (ATP), may be a fundamental driver of ME/CFS.” (I describe this sensation here, and liken it to the Keto Flu.) This is why, as I describe here, the sensation is nothing like normal fatigue; it’s a complete lack of ability to power the body. ME/CFS is a diagnosis of exclusion, meaning the diagnosis is based on the presence of symptoms that can’t be explained by other illnesses. There is no medical consensus as to what causes ME, and the presentation can vary widely between individuals.
Fatigue is generally made worse by exertion (post-exertional malaise,) but doesn’t improve with rest. (For someone with ME, “exertion” might mean sitting up in bed.) Sleep disturbance is common, as are heart arrhythmias, and orthostatic intolerance (failure of blood pressure to keep up with changes in body position, sometimes leading to syncope [fainting].) The symptoms of ME indicate widespread systems failures within the body, from immunosuppression, to neurological symptoms such as brain fog and inability to tolerate light and sound, to organ failure (renal failure being most common.)
Presentation may vary widely, and individuals may receive many concurrent diagnoses, such as chronic Lyme, Mold Toxicity, and autoimmunity. Many individuals with the symptoms of ME/CFS never receive a diagnosis.
Dysautonomia is an even wider umbrella term for the wide array of symptoms caused by an improperly functioning autonomic nervous system.
If you have been diagnosed with ME/CFS and are looking to self-educate on possible causes and treatments, the following are the starting points I would recommend, after a year of doing the same:
The most comprehensive summary of potential causes and treatments: very biology-based, a dense read, but well organized so you can hop around.
A blog detailing one doctor’s personal experience of ME/CFS: polyvagal theory and trauma-informed, extensive resource for self-advocacy and self-healing.
A world-renowned ME/CFS expert’s take: a wiki-style page, very dense, a goldmine of evidence-based speculation on causes and treatments.
Please see My Healing for information about the specific modalities I used to recover.