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

[shak8]

Here's a relevant FM pain science article for you @Friendswithme.

You see, pain may have a dessert-like topping (the CBT, brain retraining---all candy frosting but irrelevant to causation and ultimately prevention or cure), The real deal is that FM pain has a physical origin, ie the symptoms are a result of this physical origin, and one can talk of brain memory and prediction and so forth, but that is icing on the cake. We pain patients know all about treating pain with non-pharm and pharm methods, as well as distraction and having pleasant uplifting experience---all of these are key.

But the real deal is that pain is caused by processes that are physical. Please read the following:

Evidence for spinal disinhibition as a pain-generating... : PAIN Reports

arker of spinal disinhibition is impaired H-reflex rate-dependent depression (HRDD). Objectives: This study investigated whether patients with FMS exhibit evidence of spinal disinhibition. Methods: Thirty-one individuals with FMS and 20 healthy volunteers underwent testing of Hoffman reflex...

journals.lww.com

 

[Holinger]

Anything by Lorimer Moseley is worth reading. He has a huge body of research behind him now.

I doubt that very much. Lorimer Moseley’s main grouse is thinking of pain as a thing that can be controlled by the patient( he gives the example of alcoholism). He promotes ‘danger in me’ dim, Safety in me (sim) where the patient should reframe a bad feeling when confronted with movement or an activity. I presume this is similar to the Neuro linguistic reprogramming courses. His business model is the same as Phil Parker and John Sarno in this way. I may have missed something but I have not seen and data on the DIM/SIM program being effective for lower back pain in a reasonable quality study. I don’t remember him ever mentioning Me/cfs or Fibromyalgia with his parter David Butler.

 

[Hutan]

Here's a relevant FM pain science article

We have a thread for the fibromyalgia paper here.

 

[JemPD]

@Friendswithme

Sorry I not well enough to go back through & gather the quotes, but I'm trying to understand what's being said by Brt advocates versus CBT/GET advocates.... So I'm going to write here what I think I've gleaned from what you & others have said about brain RT process ideas, to check if i've understood you. Because if i have, i want to ask some questions.

So...
In the CBT/GET paradigm the problem lies with a sufferer believing they are ill when actually they are not, which causes them to misinterpret NORMAL sensations of deconditioning, & then 'take to their beds' in erroneous fear - causing yet more normal sensations of deconditioning & some of simple anxiety.

Either that (or as well as that) person is in distress and is 'converting' emotional distress into a bodily symptom to get the person's emotional needs met in a secondary way (such as attention/some other 'secondary gain')

Therefore they need to keep pushing through the symptoms in order to reveal to themselves that actually as they do push through, nothing bad will happen, while simultaneously sorting themselves out with psychotherapy so they learn to get their needs met properly, & the combination will mean they therefore will drop their erroneous ideas of being 'ill', & regain their lives.

...

Whereas for BRT the idea is a bit different, in that it possits that the sensations experienced are not 'normal sensations of deconditioning & anxiety being interpreted as symptoms of illness'. But rather that, while there is still no biological reason for symptoms, it is the brain producing the same symptoms as if there were, but that are not actually needed.

So in an acute episode of flu the brain (on instruction from the immune system) produces symptoms (ie sickness behaviour), in order to cause the person to behave in a way that will protect the organism - by enabling all it's reseources to go into fighting off the threat of the infection, & evolutionarily - to make them withdraw from the tribe in order to reduce spread.

But for eg. phantom limb pain, it's 'misfiring' in some way & erroneously producing pain in an amputated foot.

And the idea in BRT is that symptoms in ME/CFS are due to a similar 'misfiring'...
It's sending out flu-like sickness behaviour symptoms etc because it is, in essence, "getting it wrong". And sending out 'protect the organism & the tribe' signals unnecessarily, due to a process thats become in some way & for some reason, deranged.

So while the person's interpretation of those symptoms as symptoms that are identical to symptoms of illness, is correct, the driver of those symptoms is a deranged process within the brain - because the brain/rest of the body actually has no need for sickness behaviour.

And the process of healing using BRT, is to

1, inderstand that this is whats happening
2, 'retrain' the brain using certain methods (none of which are pushing through symptoms), so that the deranged process becomes healthy again & the brain no longer sends out unnecessary protective signals.
3, at that point the symptoms lessen (&, crucially, not until then) you begin to increase activity levels & retrain the muscles/cardiovascular parts of the body, with exercise.

So in BRT you dont tell yourself that the symptoms are not actually symptoms of anything except anxiety & deconditioning, & to simply push through them until they go away... you tell yourself something like "I feel very ill because my brain is trying to protect me but is misfiring", & then train it to stop misfiring (by whatever means). And then you are able to feel a little better & do a litle more & so on until you work your way out of it (as the reduction insymptoms allows).

We all know what CBT/GET says & I know the LP most definitely tells you to push through symptoms - to ignore them & tell them to "STOP" & 'choose the life you love', before proceeding as if they already have, leading many people to end up a lot worse of than they were before!

But I distincly remember your saying that BrT is not about 'pushing through symptoms' in one of these threads, so am trying to understand what other forms of BRT are saying.

Have I understood the argument?

Edited to add: just to clarify, when I say ‘argument’ I mean concept/theory - Im not seeking to have ‘an argument’

 

[Arnie Pye]

you tell yourself something like "I feel very ill because my brain is trying to protect me but is misfiring"

I understand what you are saying, and I realise this is what brain retraining enthusiasts are saying, but I don't really understand how patients are supposed to do what they are told is required.

I'm not a doctor. I don't have a lab that does blood testing, I don't have an MRI machine in my garden shed - so how am I supposed to know when something is a brain misfire or an actual problem?

The assumption by the BRT people is that they are never wrong, and it is the patient who is wrong. This is absolute nonsense. Doctors aren't infallible gods and they don't always find a problem the first time they look. But with BRT all responsibility gets passed on to the patient at the earliest opportunity.

It's an absurd situation in which the patient is never the winner.

 

[JemPD]

I understand what you are saying, and I realise this is what brain retraining enthusiasts are saying, but I don't really understand how patients are supposed to do what they are told is required.

I'm not a doctor. I don't have a lab that does blood testing, I don't have an MRI machine in my garden shed - so how am I supposed to know when something is a brain misfire or an actual problem?

The assumption by the BRT people is that they are never wrong, and it is the patient who is wrong. This is absolute nonsense. Doctors aren't infallible gods and they don't always find a problem the first time they look. But with BRT all responsibility gets passed on to the patient at the earliest opportunity.

It's an absurd situation in which the patient is never the winner.

I trust you understand Arnie that what I said isn’t *my opinion, and may not be a good description of the theory or indeed be correct about the theory Im trying to understand in order to describe.

I don’t disagree with you, Im just trying to get my head around what is actually being said because I can’t read it all from the source, & what bits I been able to read on the threads here is very muddled & amalgamated with the CBTGET ideas…

Im trying to understand the nuance.

But yes I agree. If I *have understood correctly then my concern would be, if it’s possible to “retrain” the brain (& I don’t say that it is, I wouldn’t know) but let’s say that it *were possible, & I manage to somehow “train” my brain to stop sending out “wrong/misguided” signals…

What happens if it actually wasn’t sending out a wrong signal at all? And I’ve trained it to ignore the threat it detected…. ??

But I’m getting ahead of myself, I want to hear whether I’ve correctly understood the theory first. Particularly the part about *when one is supposed to start doing more exercise/activity - before or after symptom reduction occurs.

 

[Arnie Pye]

I trust you understand Arnie that what I said isn’t *my opinion

Oh, completely! I wasn't criticising your post. I was criticising brain retraining, which has always sounded like nonsense to me - and cruel nonsense at that.

 

[Sean]

The assumption by the BRT people is that they are never wrong, and it is the patient who is wrong. This is absolute nonsense. Doctors aren't infallible gods and they don't always find a problem the first time they look. But with BRT all responsibility gets passed on to the patient at the earliest opportunity.

And all the blame when it doesn't work out.

It's an absurd situation in which the patient is never the winner.

It is about as nasty and dangerous a double bind as is possible to inflict on a human. They have left no possible response for patients that is both valid and safe.

I still can't believe they are getting away with such an obviously false and cruel demand. Every time this stuff comes up I feel like they have upped the already sky-high dose of crazy pills they are feeding the world, including themselves.