I was pondering the comments here, especially
@Jonathan Edwards' hypothesis regarding the body's signalling. Thinking about my wife's illness, there is nothing I can see in my observations that would discount that idea.
The notion of bodily distress signals provoking vital corrective action must, in evolutionary terms, be a very ancient development; very many species seem to have this sort of protection mechanism. So I'm guessing it must be a pretty low level mechanism within our biology.
So I think from what Jonathan is saying (apologies if I've misunderstood), it could conceivably be - nothing proven, just a possibility - that for a person with ME their energy processing system itself could be absolutely fine, energy in, energy out, all working as it should.
But what if the body's signalling mechanism has got screwed up, and is signalling the body has reached exhaustion point long before it really has. The person's very real and inescapable perception will then be that their body has reached its limit, and they must slow down or stop. Just like if they touched something a bit warm, but their body erroneously signalled back that they were touching something red hot. The overall effect would be just the same as if their body really experiencing the extreme trauma being signalled, the body would have no way to discriminate between real signal levels versus grossly amplified ones, the perception would be the same so the body's natural responses also would be. Our perceptions of these things are, in a very real sense, what our body is telling us about these things, truthful or otherwise. A bit like if we set our boiler to come on at 20 degrees, but somewhere between the thermostat and the boiler controller the signal gets corrupted to 50 degrees even if the room temperature is really 10 degrees, then the boiler will stay off - it can only believe what it is being told.
It might be argued: But what about how GET really does harm some people, and that pushing through these artificially high signals can and does sometimes make people much worse? Surely that could only be the case if there really was something wrong with the energy handling system itself? But that would not necessarily follow. If the fundamental problem for people with ME is their signalling system grossly amplifying its warning signals, and the person unable to distinguish between real and fake signals, then it is also a strong possibility that something like GET simply increases the damage to the signalling system itself, so it might then deliver even more corrupted signals than before. And this would all be purely at the physical level, even if it included some of the physical signalling apparatus within the brain itself.
Could this also be why people with ME also experience pain a lot? I imagine that the body's signalling mechanisms for exhaustion and pain, being they are all trauma warning signals, maybe share a fair bit of common biology. What if the same signalling fault also exists for some of the pains signalling, and that gets inflated levels also?
Edit: A thought
@Jonathan Edwards. I don't know if this would be ethically feasible or even practicable. But would there be any milage for proving/disproving this, by somehow safely temporarily disabling such signalling mechanisms to see how the body reacted? I'm guessing not, because if the problem turns out to
not be a signalling issue, then such study might end up committing the same kind of damage as GET. But just a thought.