Why is understanding of the disease so critical? Let's avoid the meaningless circular philosophical debates and concentrate on specifics. If researchers and clinicians don't bother to understand the disease they can't treat it. If I go into a clinic and the doctor doesn't know the difference between fatigue and PENE, I am wasting my time. It took decades for one or two researchers to grasp the difference and to begin to research PENE (as the Lights have done). Most clinicians and researchers still don't know and don't care. Similarly other symptoms have been either ignored or poorly researched. Eg POTS/OI or whatever you want to call it. Effects of the condition do not disappear on lying down, but persist for hours or days. Yet I have not seen this studied. It seems as poorly understood as the fatigue side of things. Edit: Sorry Alex, it appears (as Bob points out below) that I have reiterated a point you have already made.