Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

[Chandelier]

If I went from 50% to 75% recovered, I wouldn't call it recovered. I’d say I’d improved.

Let’s take a moment to truly appreciate this nifty phrase by the BPS folks:

“Healing is never ending.”
—CFS, recovered after 4 years

That sounds recovered.

 

[Joni]

Regardless of the terminology, she has apparently improved significantly. She's claiming to have improved 75% from her ME/CFS symptoms and to no longer fit the diagnostic criteria for the illness, plus to have recovered from MCS. She says she no longer has PEM, which to me is huge.

The reason I posted about her is because the vast majority of brain retraining so-called recovery stories are obviously bogus, but this is one that I find baffling since she's always struck me as reasonable after having been in the same groups for over a decade. She's already discounted the usual theories of coincidental timing, other treatments helping, etc.

I do not understand how someone can go from 10 years bedbound to salsa lessons with meditation and "emotional work." Those were the first interventions I did -- in fact, I *was* doing them before I got ill, and continued them well into the illness. Still getting worse from ME many years later. I still crash whether I'm doing something enjoyable as much as something unpleasant.

I realize people are sometimes poor historians of their own health. But there's also the idea that people should be believed when they recount their own experiences, (ETA- and I've had infuriating experiences with people telling me a very clear effect of certain dietary experimentation couldn't have possibly happened to me, when it did), so I don't know what to make of this kind of thing.

 

[duncan]

Luck. It happens. It might not sound scientific, but the dice roll our way when they roll, sometimes. Rarely, but sometimes.

When we figure out why, it will have all been crazily obvious.

 

[Utsikt]

She's already discounted the usually theories of coincidental timing, other treatments helping, etc.

She can’t possibly know that.

I realize people are sometimes poor historians of their own health. But there's also the idea that people should be believed when they recount their own experiences, so I don't know what to make of this kind of thing.

You can trust their observation (my health is better than it was, and I did X at the same time), but doubt their interpretation (my health improved because of X).

Although I’m not sure I would even trust all observations, at least not timelines. Humans are notoriously bad at that, it’s not unique to brain retraining supporters.