I'm torn about all of this.
On the one side, like
Sushi, deconditioning cannot explain the course of my illness. And I would hate for anything to put fuel on the fire of mistaken doctor impressions that if we just "exercised more" then everything would be okay.
On the other side, if those key points about exercise could get out (you shouldn't notice it, everyday activities count, don't go above your threshold, etc.), I think that could do a lot of good. Many doctors already think they should be pushing exercise. It would be a lot less harmful if they also knew to emphasize these limits.
It also might take some of the psychosocial thunder away and reclaim it for ourselves. Sure, some people responded to increased activity, and here's the biological reason why. Then it's not as much about trying to fight their data, just their interpretations of it (which is a LOT easier to do than helping people understand why the trials were so deeply flawed).