This is a great comment. A lot of what OP says is pertinent to other poorly-defined chronic diseases too. As a community, physicians and researchers are really

This is a great comment. A lot of what OP says is pertinent to other poorly-defined chronic diseases too. As a community, physicians and researchers are really not capable of dealing with such conditions right now. As a result, large numbers of suffering people end up neglected and you have, for example, patients with chronic fatigue syndrome using anti-retrovirals off-label on totally spurious grounds.