I had a patient who was misdiagnosed and taken to a mental health department. Eventually this patient was diagnosed with ME / CFS, which stands for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. They have also been diagnosed with mast cell activation syndrome and postural orthostatic tachycardial syndrome (POTS), which tend to coexist with ME / CFS.
ME / CFS was poorly recognized and was first recorded as an actual disease by the medical institutes in 2015. Because of this, it was not included in medical training. “Myalgic” means muscle. “Encephalo” means brain. And myelitis is inflammation of the nerve coating. So we know the nervous system is involved. What we also now know is that it affects multiple systems, including the endocrine and gastrointestinal systems. Patients also experience changes in perception.
The diagnosis of ME / CFS at this point is clinical, which means it is based on symptoms and has been one of the biggest hurdles for patients who suffer from it. Symptoms include relentless fatigue, brain fog, difficulty standing up, nausea, numbness and tingling, flulike symptoms, severe muscle pain, unrestful sleep, difficulty coordinating movements, and cognitive disorders such as difficulty finding words and slow speech.
The symptoms that make up the diagnostic criteria are quite simple. However, from a research perspective, we can enroll these patients and perform various laboratory tests that are not available to your general provider. Because of this, it is very difficult for providers to validate patient experience. The regular tests that doctors do just don’t show anything.
With the robust laboratory resources that researchers have, we have found objective evidence of pathology. Two examples that have been documented are inflammation in the brain and dysfunctional natural killer cells, a type of white blood cell.