If you are a very severe patient and every step downward on the scale from mild toward worsening followed (post-) exertion - every single time over a 10 years timespan - then that is pretty good evidence.
That’s what I said: avoiding avoidable deterioration.
And “not interfering with the naturally occurring course”? What is that even supposed to mean, what’s your control group here?
If pacing has no influence on your or anyones disease course - why not go for a run then? Just because of a little bit of PEM in the aftermath?
You’re misunderstanding. That might be my fault.
Running on a broken leg is like exercising if you have PEM. It will make things worse.
Not running on a broken leg will not make the leg healing process of the leg move any faster. It won’t make the cells work at a higher tempo. That’s the natural course of a leg break.
So resting your leg avoids the avoidable deterioration, but it doesn’t make the leg heal faster compared to baseline, only faster compared to running on it.
Pacing might not be a treatment in the common sense but even that is an open question, because PVFS could be just better pacing early on eg.
Better as in «not deteriorating from doing too much», sure. But we do not know if pacing early on makes you less likely to have ME/CFS in two or five years. We don’t know if early over-exertion «locks in» ME/CFS.
——
Regardless, this entire line of reasoning is redundant, as I’ll try to explain below. We don’t need to be able to say that pacing can affect the natural trajectory of the condition in order to be able to recommend pacing:
I think not pacing with PVF is a bad idea because the deconditioning you’ll experience isn’t causing the main symptoms and it can be reversed if you improve, so it isn’t much of a consideration.
If you do end up with having ME/CFS long term, pacing early will have helped you avoid the avoidable deterioration, which is clearly better than attempting to avoid a bit of relatively harmless deconditioning.
Unless you develop something like a sincere fear of activity, you’ll end up doing too much sometimes for various reasons, and the reaction to that will let you know with decent certainty if you’re improving or not. So there is usually no need for experimenting too much with more activity.
Pacing will also help avoid having to deal more than necessary with very bothersome symptoms. Although some might think it would be worth it, especially in the beginning when the contrast between recent good health and current bad health is crystal clear. Time helps you shift perspective and to some extent deal with the losses.
And I think this part can be deal with reasonably well if we had a healthcare system that wasn’t in complete denial.
Lots of people get help every day dealing with devastating medical diagnoses and prognoses, and they turn their lives completely upside down in an instant. Some won’t adapt regardless of what they have, but that shouldn’t stop us from recommending pacing. We can’t force anything upon anyone.
So no matter what you have, pacing early is probably optimal.
