I had a patient who was misdiagnosed and placed in a psychiatric unit. Eventually, this patient was diagnosed with ME / CFS, meaning myalgic encephalomyelitis / chronic fatigue syndrome. They were also diagnosed with mast cell activation syndrome and postural orthostatic tachycardia syndrome (POTS), which co-occur with ME / CFS.
ME / CFS is poorly recognized and was first included by the Medical Institutions as a real disease in 2015. Therefore, it is not included in medical training. “Myalgic” means muscle. “Encephalo” means brain. And myelitis is an inflammation of the nerve sheath. So we know the nervous system is involved. But what we now also know is that it affects several systems, including the endocrine and gastrointestinal systems. Patients also experience changes in cognition.
The diagnosis of ME / CFS at this time is clinical, meaning it is based on symptoms, and this has been one of the main obstacles for patients suffering from it. Symptoms include constant fatigue, brain fog, difficulty standing up, nausea, numbness and tingling, flu-like symptoms, severe muscle aches, restless 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 take these patients and run a series of different laboratory tests that are not available to your doctor. This makes it very difficult for service providers to validate patient experiences. Regular tests that doctors do simply show nothing.
With the powerful laboratory resources available to researchers, we found objective evidence of pathology. Two recorded examples are inflammation in the brain and dysfunctional natural killer cells, a type of white blood cell.