Myalgic encephalomyelitis is a severe, chronic neuroimmune disease that impairs multiple bodily systems, including the nervous, immune, and metabolic systems.
The hallmark feature of myalgic encephalomyelitis is post-exertional malaise (PEM), or, more accurately, post-exertional neuroimmune exhaustion (PENE), but PEM is currently the most used term, so I will use that in my texts. PEM is a profound systemic crash accompanied by severe worsening of symptoms and triggered by minor physical, cognitive, or emotional exertion. Normal daily tasks can cause a multi-day collapse or even permanent decline.
Core symptoms of myalgic encephalomyelitis include:
- Neurological dysfunction: Debilitating cognitive dysfunction, short-term memory loss, persistent neuro-immune fatigue, and a severe intolerance to light, sound, and sensory stimuli.
- Orthostatic intolerance: Lightheadedness, dizziness, and rapid heart rate when upright or standing. Orthostatis itself can also be a trigger of PEM.
- Unrefreshing sleep: Chronic sleep disturbances that fail to restore physical or mental function.
- Widespread pain: Headaches, nerve pain, and severe muscle or joint pain
There is currently no universal biomarker, cure, or universally effective treatment for myalgic encephalomyelitis. Management focuses strictly on symptom control and activity pacing to prevent PEM.
The Bateman Horne center is a great ressource for patients, allies, and doctors alike who want to know more about myalgic encephalomyelitis and how to manage it.
https://batemanhornecenter.org/