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.

 

[NelliePledge]

I’m not giving anyone promoting this any traffic.

 

[NelliePledge]

Dr Klimas nervous system comments at minutes 12:25-18:00

still not giving it any traffic

 

[Utsikt]

Okay, so let’s go through what they said:

Dr. Klimas: So if you think about what you can do to help people, you got to do things that make their parasympathetic system come back.

So now we’re doing biobabble.

Now, there are things you can do that have nothing to do with drugs that do that. In fact, some of the most effective PTSD treatments ever was transcendental meditation.

They might be referring to this review that’s all based on unblinded studies with subjective outcomes.

I mean, putting people but really aggressive, intense, real meditation where people go into these weekend workshops and really learn how to get it to the point where they’re having physiologic changes because they get that relaxed and then learning how through sort of a biofeedback loop to get themselves there quicker, quicker, quicker. And then do daily meditation.

That’s a lot of interpretation that is probably quite baseless.

There’s parasympathetic breathing techniques where you’re just moving your diaphragm by huffing and puffing up and down your diaphragm which is a vagal nerve which is parasympathetic nerve. So you’re driving it. There are parasympathetic drives that are vagal stimulators that people can buy this stick right behind their ear or on their neck…

Those drives have been tested and have not shown any benefit.

Dr. Klimas: So there are different ways to try to and it’s not fast. It took years at least months but sometimes years to get so out of balance that the super highways in your brain that regulate this are sympathetic. And trying to get a balance back and get that normal signaling pattern back that’s more balanced. It takes months and months of real personal hard work.

Even further into speculation land.

It’s not just “here have a medicine,” you know, “I can fix that.” It’s like you need to put in vagal nerve training and these are all the things you need to do to try to do that.

Even further..

It’s disappointing to see yet another professional just get completely lost in all of this babble. They are sounding like life style coaches on TikTok.

 

[dave30th]

'little parable story'

what is the little parable story??

 

[MrMagoo]

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

Healing cannot be neverending, that would make it as interminably long as this lot go on about it, frankly I’d rather be ill if that’s the alternative