Unevidenced recommendations of brain retraining in Bateman Horne Centers clinical guide for ME and longcovid

If brain training is not going to impact on the underlying condition and you should only attempt it when well enough and stable enough, as per the Center’s communications, what is the point of it? What is doing this ‘training’ supposed to achieve? Is it safe or acceptable to recommend something, even if it may have some sort of support or maintenance role when the practitioners are separately marketing it as a curative treatment?

Is the Center effectively saying do this cautiously knowing you will have to ignored much or what your practioner advises? If so how will the patient know what to listen to and what to ignore?
 
Because I am subscribed to the Bateman Center's newsletter, I get frequent emails asking me to donate to the center.
I wonder now much people- or client-pleasing behavior influences the mention of brain training.

Does pleasing the clients by validating their anecdotal (n=1) reporting, instead of sticking to medically evidenced guidelines, have anything to do with raising funds from them and their families and friends. The idea of not alienating anyone, of accepting everything from everybody so as to increase donations?
 
From the conclusion of post 3 from @MittEremltage
I don’t really understand why BHC insists on talking about ‘programmes’. If they had been content to talk about strategies for managing stress, about how mindfulness, affirmations and breathing exercises under individual supervision can benefit these patients, it would have been different.
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I don’t agree with the things that are not programs. There is no evidence for this either.
 
Utsikt said:
From the conclusion of post 3 from @MittEremltage

I don’t agree with the things that are not programs. There is no evidence for this either.
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Yes, you are right about that. I was mostly thinking that the possibility to customize for the individual that BHC is talking about is basically non-existent if they participate in a program compared to getting help managing stress in an individual treatment relationship.
 
MittEremltage said:
Yes, you are right about that. I was mostly thinking that the possibility to customize for the individual that BHC is talking about is basically non-existent if they participate in a program compared to getting help managing stress in an individual treatment relationship.
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I don’t think there is much evidence for individual treatment relationships either, but it’s probably more widely accepted.

I had lots of benefit from working with my therapist, but that was probably because she never tried to dictate what I would do. We just talked about things and she gave suggestions for things I might try. I probably immediately turned down half of them and only stuck with a handful.

But therapy isn’t regulated and the content is completely arbitrary. There is no guarantee that individually tailored approaches in general will have any benefit, and it’s probably mostly dependent on the therapist not being convinced they know everything or being married to their pet theory.
 
shak8 said:
I think that brain retraining could result (however briefly) in an increased sense of personal control over the illness. Perhaps dopamine is released or endorphins or some other neurotransmitters.

It may also include a bit of magical thinking and placebo response.
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If one employs relaxation techniques, learns to tolerate some of the milder intrusive symptoms somehow (I am not convinced that moderate to severe symptoms can be downplayed by the mind's efforts) this concerted effort by a PwME or FM may release more beneficial neurotransmitters and thereby improve mood.
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I just wanted to correct some inaccuracies or misunderstandings I've spotted in this thread.

Brain retraining is not about tolerating milder intrusive symptoms.

It's about learning that symptoms can be generated by the brain as a warning signal that it doesn't need to send (the idea is it can become over sensitised in certain conditions, such as when someone has experienced trauma or has a particularly sensitive temperament). The techniques acknowledge your symptoms are real but teaches you how to dampen down the brain's sense of being under threat so they stop. The symptoms go, you aren't ignoring anything or tolerating anything.

It's not so much about neurotransmitters as about calming down an overactive primitive alarm system.
 
Grigor said:
My response:
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I respect your right to email them but there are a couple of inaccuracies here that I felt important to address.

'Instead, they suggest the brain is misinterpreting harmless bodily signals as harmful.' This is not quite right. It's not that there are harmless signals that people are making a fuss about when they shouldn't, it's that there are signals but the brain is generating them as a warning system. So we can teach the brain to calm them down as there is no real physical threat. You get taught to watch for symptoms that might jump around, which can indicate there is nothing structurally broken, to then teach your brain it is safe and doesn't need to keep sending out signals indicating harm. Weird but true. It's why some people make such quick recoveries after years of being ill.

'Surely the BHC is aware that this assumption is false?' I know its a big leap to accept there might be nothing physically wrong with your body but there isn't actually any replicated evidence that has found anything wrong in M.E so it's not a false assumption. Real symptoms, yes, but no actual damage found. You will always get small studies showing issues just because the symptoms are real and have an impact on test results but nothing has been found as yet that demonstrates causality.
 
Friendswithme said:
'Instead, they suggest the brain is misinterpreting harmless bodily signals as harmful.' This is not quite right. It's not that there are harmless signals that people are making a fuss about when they shouldn't, it's that there are signals but the brain is generating them as a warning system.
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That sounds like what Grigor said. He said the idea is that the brain is misinterpreting the signals, not "people".
 
Friendswithme said:
It's about learning that symptoms can be generated by the brain as a warning signal that it doesn't need to send (the idea is it can become over sensitised in certain conditions, such as when someone has experienced trauma or has a particularly sensitive temperament).
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This is a completely unevidenced statement.

I also don’t think that anyone has the power to define «brain retraining». Are you saying that you definitely know that what @shak8 is saying has never been said by those that claim to teach «brain retraining»?

And who is the brain sending symptoms as warning signals to?
 
Friendswithme said:
I know its a big leap to accept there might be nothing physically wrong with your body but there isn't actually any replicated evidence that has found anything wrong in M.E so it's not a false assumption.
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It’s an assumption that can never be proven as true. Do you agree that that’s a problematic starting point for designing an intervention?
 
Friendswithme said:
Brain retraining is not about tolerating milder intrusive symptoms.

It's about learning that symptoms can be generated by the brain as a warning signal that it doesn't need to send (the idea is it can become over sensitised in certain conditions, such as when someone has experienced trauma or has a particularly sensitive temperament). The techniques acknowledge your symptoms are real but teaches you how to dampen down the brain's sense of being under threat so they stop. The symptoms go, you aren't ignoring anything or tolerating anything.
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It's the claim, but there is no evidence such a thing exists, no matter how popular that belief may be.

Otherwise, why not promote homeopathy also? Or acupuncture's "body reprogramming". Or The Secret?
 
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