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

JellyBabyKid said:
That's what I thought he meant. We haven't found evidence, therefore there isn't any. But if they are only looking using standard tests then they won't find any evidence, but that isn't proof it doesn't exist
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Many times they don’t even look. Their divine insight enables them to just know that nothing is wrong except for their pet explanation.
 
JellyBabyKid said:
That's what I thought he meant. We haven't found evidence, therefore there isn't any. But if they are only looking using standard tests then they won't find any evidence, but that isn't proof it doesn't exist
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The problem starts with the medics just ruling out a few bad thing, but not testing anything related to ME/CFS, concluding nothing wrong, concluding it must be psychological.
Psychologists concluding now the patients are ours.
That's 3 times concluding without evidence and messing up our lives in a vicious circle.
 
Utsikt said:
I suspect «this» means the lack of biological explanations for ME/CFS?
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Sorry, foggy brain! I meant that ongoing symptoms of ME or LC post the acute infection or precipitating event are defined as mind-body symptoms because they are continuing after the acute infection has resolved. But if they are ongoing symptoms then the infection has not resolved, surely?

Also how is it that ulcers and epileptic seizures were mind-body presentations, until a cause was found, and now ME and LC are an evolution of / replacement mind-body symptoms, because they are persisting past the point of acute infection. The logical leap they are making doesn't make sense to me. If x is organic then isn't it more likely y is, but we haven't found the cause. Not x turned out to be organic so y must be a fault in the wiring as these symptoms have to be expressed somehow? This doesn't make sense to me and I am really struggling to understand it. I am clearly missing something or some part of the argument?

Utsikt said:
It’s also why for FND, they have started using positive signs for diagnosing it, instead of actually ruling out other causes
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There is a positive, rule in sign for FND? Which is what?
 
JellyBabyKid said:
Sorry, foggy brain! I meant that ongoing symptoms of ME or LC post the acute infection or precipitating event are defined as mind-body symptoms because they are continuing after the acute infection has resolved. But if they are ongoing symptoms then the infection has not resolved, surely?
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No worries! Ongoing symptoms does not have to be caused by an ongoing infection. The viral persistence hypothesis is popular online, but I don’t think it has gained much traction here.
JellyBabyKid said:
The logical leap they are making doesn't make sense to me.
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JellyBabyKid said:
This doesn't make sense to me and I am really struggling to understand it. I am clearly missing something or some part of the argument?
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You’re not missing their argument. They have no argument. They literally say «it must be this because I think it is this», and interpret everything as supporting their opinion without entertaining other possible interpretations, unless it doesn’t support their opinion - at which point they just ignore it. Or they just lie and say that the evidence supports their opinion when it disproves it.
JellyBabyKid said:
There is a positive, rule in sign for FND? Which is what?
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They use a circular argument. If you have FND symptoms (which are any symptoms, really), you have FND. And the fact that you have FND proves that your symptoms are FND symptoms.

It isn’t intended to make any sense.
 
Utsikt said:
Ongoing symptoms does not have to be caused by an ongoing infection
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True. But at which point does it cross the threshold from real, organic illness to mind-body symptoms?

I am trying very hard not to be facetious, but am failing, I'm afraid.

Utsikt said:
They literally say «it must be this because I think it is this», and interpret everything as supporting their opinion
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Oh. Really? I was really hoping I had missed some vital piece of the puzzle.

The chronic pain explanation makes some sense, and I say that as someone who lives with chronic pain and has been to lectures by leading scientific minds on it, attended pain clinics and tried a wide variety of solutions, so I am in the words of Mulder, "wiling to believe", but I am struggling to understand the interferential leap to "my brain is producing "ghost" chronic illness symptoms". The explanation that if you have symptoms in multiple systems and organs it must be mind-body doesn't work because how do you explain HIV, various cancers, Lupus etc, etc, which have multiple symptoms and an organic cause? X is organic but Y can't possible be because it doesn't sound likely?

Huh? Confused.

Utsikt said:
If you have FND symptoms (which are any symptoms, really), you have FND. And the fact that you have FND proves that your symptoms are FND symptoms.
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Well, my head hurts now.

Thank you for engaging in this discussion and explaining it further, I appreciate the spoons used.
 
JellyBabyKid said:
True. But at which point does it cross the threshold from real, organic illness to mind-body symptoms?

I am trying very hard not to be facetious, but am failing, I'm afraid.
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It’s always organic because our brain is organic. But the mind-body folks believe that the brain can cause all kinds of symptoms and illnesses, including ME/CFS. They say this based on very flawed understandings of neuroscience. Although some of them still believe that the mind is separate from the body, but that’s just because some used to think of the mind as what the soul is in religion.

ME/CFS is probably caused by some other biological processes than viral persistence, but not the kind that the mind-body folks talk about.
JellyBabyKid said:
Oh. Really? I was really hoping I had missed some vital piece of the puzzle.
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No, there really isn’t more to it than that.
 
On the assumption that brain retraining is considered appropriate treatment because ME/CFS is considered by its proponents to be psychogenic - I went looking for the counter argument - that it is not psychogenic. I found this thread. I have not read the paper in full but thought this would be a useful prompt for interested forum visitors & members to relook at it. EDITED clarification that the paper does not make the case for MECFS not being psychogenic per se but is more against the assumption of psychogenic causes.
MSEsperanza

Thread 'Psychogenic explanations of physical illness: Time to examine the evidence, 2015, Wilshire & Ward'

Wilshire, Carolyn & Ward, Tony. (2015). Psychogenic explanations of physical illness: Time to examine the evidence. Perspectives on Psychological Science 2016, Vol. 11(5) 606–631.
https://pubmed.ncbi.nlm.nih.gov/27694458/
(paywalled)

Abstract

In some patients with chronic physical complaints, detailed examination fails to reveal a well-recognized underlying disease process. In this situation, the physician may suspect a psychological cause.

In this review, we critically evaluated the evidence for this causal claim, focusing on complaints presenting as neurological...
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This post and some following posts have been moved or copied from;

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

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.
shak8 said:
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.
 
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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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