Not sure if there are many other examples, but Ron Davis mentions one potentially successful case (or could be spontaneous remission) of someone recovering after avoiding crashes for a year: https://twitter.com/user/status/1811036135885254741 "One researcher had ME and she didn't have a crash and after a year she got better."
I do know that it is not unheard of for people on the milder end of the spectrum who have already lived a decade or more with the disease, to manage really long stretches (like multiple years) without triggering PEM. Also “avoiding crashes as a treatment” might generally fall into the term of “pacing”.
I think this might be more intense than pacing, as it's difficult to be cognizant of one's exact limits, and crashes still happen. I assume this would be doing far less than one feels they can handle so that there is zero chance of a crash.
It really depends what your definition of pacing is. I’ve seen pacing used for so many things from “try to gradually increase your activity levels while minimising crashes” to “only do 30% of what you think you can do”. I think in general it’s about minimising PEM.
I did ART for almost six years after M.E onset and improved 90%, so decided to exercise and discovered extreme delayed PEM for the first time.
I don't know why Ron Davis found this anecdote worthy of mentioning in the context of cure. Some people recover spontaneously, we already know that. If there is a correlation between the recovery/improvement and crash-avoidance, we would know by now. (Even then, the lack of crash could be the effect rather than the cause of improvement). But we do know that QOL goes to hell when we are in PEM, so we could say at least that avoiding PEM helps us to maintain the status quo. But we don't know if completely avoiding PEM helps you to recover/improve. The complete avoidance of PEM is not without a cost. For some, it means doing absolutely nothing. For others, curtailing activities substantially. Not only that further reduces your bandwidth that is already constricted, it could affect your mental health as well as conditioning. That cost may be worthwhile if we know that the avoidance of PEM improves our chance for recovery/improvement. But we don't.
As far as I know, I never had a crash, yet I still have ME. So add one "doesn't work" point on the tally.
I would love to be able to live without crashing, but at this point personal hygiene flattens me, so I just can't.
Some years ago I did aggressive rest therapy for a couple of years where I did basically nothing, had no PEM and didn’t even leave the house. It made zero difference. I don’t think you can rest your way out of ME/CFS just as you cannot exercise your way out of it.
My feeling is that some people are lucky to experience some spontaneous improvement and some are not. Avoiding crashes may create the best circumstance for any spontaneous improvement to occur, minimising the negative effects or worsening due to over exertion and/or PEM, but this does not mean that avoiding crashes will necessarily result in improvement. That is I feel the underlying ME can not be directly treated by activity management other than avoiding the negative effects of PEM. There is potential variation in the underlying condition, but that can be change for the worse as well as change for the better, it being pure chance on basis of our current knowledge whether an individual has ME that may improve to some extent or that will get worse no matter what they do or don’t do.
Yes. My family's experience: I and my son and daughter developed ME/CFS after what seemed to be a viral infection. My daughter continued to try to do sport and go to school, she repeatedly crashed but improved over time and essentially fully recovered. My son continued to try to do sport and go to school. He got worse and remains affected. PEM is horrible. For someone who isn't on an improving trajectory, I think repeated PEM also results in more time spent in bed and even hypersomnia, increasing the risk of significant deconditioning. So, those are good reasons to avoid PEM most of the time. But, my family's experience is that avoiding PEM isn't a treatment.
This happened to me where ART worsened my muscle deconditioning. However, after just a few weeks of doing my usual small amount of physical activity again, I reconditioned myself to the point of my "normal" ME/CFS state. Then I hit a wall where further exertion only made things worse again. I couldn't recondition beyond my energy envelope limit. I don't aggressively rest anymore because it made things worse in some aspects (muscle wasting) and did nothing to improve the underlying disease process.
