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

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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.
 
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Joni said:
She's already discounted the usually theories of coincidental timing, other treatments helping, etc.
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She can’t possibly know that.
Joni said:
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.
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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.
 
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.
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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.
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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.
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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…
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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.
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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.
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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.
 
Mij said:
ME/CFS Long Covid shows how beliefs of irreversibility and danger can dominate perception and cause suffering to continue in the absence of clear pathology: predictive coding. Shame on #nicecoms for promoting chronicity rhetoric
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Ugh. I uttered swear words out loud. When I and my two children developed symptoms after a virus, we all assumed we would get better, in days, in weeks, in months. My daughter did recover in time, should that not have convinced my son and I to do the same?

I had ME/CFS for a year when I was 10. Why would I assume, when I got it at 48, when my son got it at 13, that this round would last well over 10 years?

We didn't know it was ME/CFS for a long time. I convinced my doctor to write a letter saying I had recovered, so that I could complete some work; I thought I was getting better. But I wasn't.

This idea of 'subconscious danger' is just so infuriating and damaging.
 
The most unhelpful belief I have had, was the false belief that any deterioration in my health was transient, but that any improvement would be permanent. Invariably when improving I added to my responsibilities such that my subsequent relapses left me in difficult circumstances that could have been avoided by being more pessimistic.
 
Hutan said:
When I and my two children developed symptoms after a virus, we all assumed we would get better, in days, in weeks, in months. My daughter did recover in time, should that not have convinced my son and I to do the same?

...

This idea of 'subconscious danger' is just so infuriating and damaging.
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To answer the first part of your post, it isn't this simple. You may well have assumed you would get better, but if we take predictive processing, the key issue is whether your brain determined you were safe or not. Multiple factors can potentially play into that decsion. Subconscious danger isn't a 'damaging idea,' it's how the brain works. We are bombarded by a huge amount of information daily - that can range from tv adverts, newspaper articles, things people share online, conversations, cars in the distance, bikes, dogs on walks, things that will relate to past (bad and good) memories. Thousands and thousands and thousands of bits of data that we can't hold in conscious awareness. Our brains make shortcuts in processing this all the time, we couldn't function without that. So your brain has one eye, essentially, on threat, in a way you aren't aware of. That is established fact. It means we can act quickly if a car veers off the road and heads towards us - we may be walking and in conversation with someone but can then spot it and act before we have time to make a conscious decision about what is happening.

None of this is about insulting you and your character, it's about the world of the brain beneath what you're aware of and it acting accordingly (i.e with a sickness response that is cleverly designed to keep you safe by getting you out of your environment for any number of reasons, including survival of your tribe)

NONE of this is being used to 'bash' people with M.E. That is pure hyperbole. It's the opposite, it's trying to HELP people understand themselves better. A key question becomes, what might have been going on in my life to trigger my brain to trigger a sickness response when my symptoms stared.
 
UkPoster said:
To answer the first part of your post, it isn't this simple. You may well have assumed you would get better, but if we take predictive processing, the key issue is whether your brain determined you were safe or not.
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But this is wrong. This has nothing to do with predictive processing. FOr some reason some psychological medicine people have misunderstood a basic neuroscience theory and got it back to front. It is quite bizarre how many people are using it without realising they are being compeltely incoherent.

Do you have any actual evidence that any of what you said is reality? Isn't it just the mumbo jumbo shamanism that psychpologists tell each other is true?
 
Jonathan Edwards said:
But this is wrong. This has nothing to do with predictive processing. FOr some reason some psychological medicine people have misunderstood a basic neuroscience theory and got it back to front. It is quite bizarre how many people are using it without realising they are being compeltely incoherent.

Do you have any actual evidence that any of what you said is reality? Isn't it just the mumbo jumbo shamanism that psychpologists tell each other is true?
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it's not normally even proper psychologists who actually did the proper broad training (psychological medicine seems a bit of a different matter as I think lots come from a different area or allied medicine area then bolt on some niche that real psychologists mostly wouldn't study other than as a need to critique it because some talk it or sell it, and think they've 'studied psychology' when they didn't do the methodologically and critiquing bit that makes it a subject)... it's people who have amateured in a pseudo area - be it 'personality' (most who studied psychology properly know that it doesn't hold up as a thing and the closest they ever got was the big 5 which doesn't describe anything of the 'orrible, nothing less externally valid than the taunt 'perfectionism' type terms they obsess over) or made up therapies.

It's often people wandering into a narrow new area they treat lightly, without the full background, and think is easy to understand because it is told to them in storytelling form and so they then think they 'understand psychology' finding their latest toy. It's annoying they are allowed to use the terms and annoying that real psychology seems to not be asked to wade in assess those trampling into areas where actually, it is much needed for those with that broad background (and not confilcted by being 'part of the industry' but instead the over-arching subject that could assess what's 'para' or not) to sense-check if it even fits or is logical at all (and consider the harm of false ideas and promises etc).
 
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Jonathan Edwards said:
Wanting to 'help people' can be extremely damaging if you have no idea what you are talking about. Medicine needs more than wanting to help. It needs enough self-criticism to check you know what you are doing
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Indeed, I'm bored of those getting to make such claims turning out to somehow believe saying that relieves them of the very fundamental thing (not intending to do harm - and genuinely so, because if you don't intend to harm you both check that you don't and are horrified, concerned and change when you realise you might be harming with the behaviour or ideas you push and always looking and checking) that should be the test of whether they can use that term or make that claim - I believe it is called being a responsible person in other areas.
 
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UkPoster said:
To answer the first part of your post, it isn't this simple. You may well have assumed you would get better, but if we take predictive processing, the key issue is whether your brain determined you were safe or not. Multiple factors can potentially play into that decsion. Subconscious danger isn't a 'damaging idea,' it's how the brain works. We are bombarded by a huge amount of information daily - that can range from tv adverts, newspaper articles, things people share online, conversations, cars in the distance, bikes, dogs on walks, things that will relate to past (bad and good) memories.
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Oh, baloney @UkPoster. I have the (sad) benefit of having three people in my family developing these symptoms at the same time, when it comes to evaluating ideas like yours. Three different people, all fairly happy at the time, different personalities, different circumstances. But ill with the same symptoms at the same time.

You may be
UkPoster said:
trying to HELP people understand themselves better.
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UkPoster. But your idea does not fit with reality. It makes no sense to suggest that all three of us experienced a psychological threat that none of us was aware of but that was sufficient to cause such debilitating and sustained symptoms.
 
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