The real question is why does a patient have to sort all this out - especially on a subject that is so basic. What is the disconnect here - and why? My answer? This is all part of a continuing "disinformation" trailing after this illness. Even those partial towards this illness have trouble seeing it.
ME/CFS is a complex, neuro-immune illness that is very likely infectious in nature, and is associated with profound immunological dysfunction. There is an existing means by which this patient population can be accurately identified -the Canadian Consensus Criteria - and cytokine/NK cell panels that can identify those with these immune dysfunctions. These patients have abnormal areas of white matter on spect scans, diastolic dysfunction, aberrant proteins in ttheir spinal fluid, viral activation, and most likely a retrovirus and perhaps more than one. These patients lead a non-life ("a living death") for many years and then die an early death, 25 years short of average life expectancy. The pattern does not vary much. Certainly some people get better, often transiently, but few people who meet the Canadian criteria return anywhere near to their former selves, especially if left untreated. I personally would like to meet one patient who has completely recovered from this neuro-immune illness. Some say that those who escape have gone back into society and gotten lost in the crowd. I say those who have disappeared are more likely to be six feet under or entombed in darkened rooms.