Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS

[Hutan]

There's a lot we don't understand.

My son went from mild/moderate to bedridden/barely conscious after one sports game (although he was only that severely ill for a month). My daughter kept pushing herself physically in substantial ways, and crashing, and yet recovered after a couple of years.

I guess a precautionary approach would suggest that avoiding PEM is probably a good thing to try to do, given how many people say that activity caused a deterioration that they didn't recover from. But, the people who did the body-building sessions and crashed and went on to recover probably aren't posting on that reddit thread. I think we need to keep in mind the range of illness trajectories, and avoid sounding certain.

 

[Utsikt]

I think we need to keep in mind the range of illness trajectories, and avoid sounding certain.

For sure. There is no way to predict what’s going to happen.

But I don’t think I could ever advice anyone to not do what they can to avoid PEM. And I’d say to not take it as a guarantee that they will get better or fully recover to their baseline (whatever that is) after a crash.

It’s a weird thing to be in that kind of a limbo. You might still recover, but you also very well might not. How do you adapt?

 

[Sean]

You might still recover, but you also very well might not. How do you adapt?

The most important advice would be to not pay any attention to advice from the psycho-behavioural school.