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

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:

 
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.
 
@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’
 
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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.
 
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.
 
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.
 
The human the brain sits in. It's a slightly odd thing to explain in that the brain is obviously the person, but with brain retraining you deal with your brain as if it is a small child. You learn to look at symptoms as anger/fear/a threat warning and talk to it to calm it down. I appreciate that sounds totally mad but it is a technique that has resonated with many thousands of people worldwide for many different types of symptoms. And it is rooted in the fact the brain is an organ that sits in your skull and relies on different signals to interpret the world and we know these signals can be wrong (see visual illusions, hallucinations, phantom limb pain). It does its best but we can learn to not trust everything at first glance. E.g, I have crashed --> there must be something wrong with me. It's a sensible thing to think, by the way. Except there isn't always because certain brain retraining can get symptoms to vanish in minutes. You can see people do somatic tracking exercises on YouTube where this is demonstrated.
@Friendswithme The traditional brain retraining paradigm cannot explain orthostatic intolerance being a core feature of (even mild cases of) ME/CFS. If it could, we would see more orthostatic intolerance in PTSD over ME/CFS, for example (PTSD being the worst stress/threat-related disorder of the nervous system with heavy ANS involvement). It also cannot explain why so many of us wake up feeling much worse than when we went to sleep. The traditional brain retraining paradigms like what Ashok Gupta came up with was a decent attempt to make sense of some aspects of ME/CFS (symptoms fluctuating by the day/hour & worsening with stress, mind-body recoveries, etc.) but it still doesn't hold up to scrutiny. The predictive coding stuff is just nonsense though and cannot explain the clinical presentation of ME/CFS at all (for ex, just take that many ME/CFS patients report the experience of going to sleep at baseline and waking up in PEM; if predictive coding were causing PEM, how can one decline into PEM while one is unconscious?)
On paper, yes! But life isn't always this black and white. There have been lots of enquiries into what might be going wrong in the body in M.E and nothing significant has been found. Yes, there is the chance that something is still lying undiscovered but that is only one possibility and it gets slimmer with every passing year.
I believe it was discovered over a decade ago, it's just been sitting ignored in sleep medicine journals. Check out my thread on UARS (yes, don't worry, it's compatible with "brain retraining"/mind-body recoveries :))
 
Fascinating - and disturbing - to see how I am discussed here- so want to weigh in with an update!

I am indebted to Sandra Goodman, Owner and editor of Positive Health, now an e-journal. However you may regard alternative/complementary medicine, she has provided me with a forum for publishing my articles, and as an advocate dealing with complicated issues it is very useful to be able to provide a link to a published article.

As I have a degree in Psychology/Philosophy, and further qualifications as a Social Worker and as a psychotherapist, it would be difficult to find another publication that would have allowed me to publish, and especially to shift my focus entirely from NLP to ME/CFS.

Before I retired from the UKCP (UK Council for Psychotherapy), I tried to get them to publish an article in ‘The Psychotherapist’ about the damage created by trying to treat ME/CFS with psychotherapy but they didn’t even answer my letter. I’m not a doctor or scientific researcher, so no chance to publish in academic or medical journals.

Sandra completely supports the views of the majority of us: that people with ME/CFS are appallingly mistreated by the UK psychiatric mafia who continue to maintain control over the medical, political and public perceptions of this disease under the BPS model. Her support means that I continue to be able to write and publish.

NLP gets a bad press - Bandler was a very mixed bag. However, for people with mental health problems, NLP can cut through a lot of the nonsense propounded by many schools of psychotherapy (and psychoanalysis) and mental/emotional suffering can often be alleviated very quickly. Its effectiveness makes it particularly dangerous when misapplied.

The most seriously abusive use of NLP that I know of is Phil Parker’s ‘Lightning Process’, which can do all the damage of CBT/GET in two days. You would not be able to print what I think of Parker and Esther Crawley and their irresponsible infliction of damage on sick children, although I suppose the word ‘evil’ is printable.

Les Simpson and the “shape populations of the erythrocytes’. He was a Ph.D. in haemorheology..the physical properties of red blood cells. The most usual shape is a biconcave discocyte (flat, round, with a dimple on both surfaces). This shape allows the 15mm wide cell to ‘deform’ enough to get through the 5mm wide capillaries which carry them to individual cells, where their function is to provide oxygen and carry away waste products (lactates). These cells are very responsive to any changes in their environment, and in a number of conditions, the red blood cell population begins to contain large numbers of cells in irregular shapes...ragged edges, cup shapes...Les identified six variations...and these are unable to ‘deform’ enough to get through the capillaries, with the result that cells become deprived of oxygen, and have a buildup of lactates. Areas particularly sensitive to this situation are muscle cells, cognitive areas of the brain, and the glands which regulate body rhythms and temperature.

We know that in ME, the aerobic muscle metabolism doesn’t work well, and our muscles quicly revert to the anaerobic metabolism, a shift usually only associated with extreme levels of exertion. But our muscles fail quiclkly, and when we continue to exert ourselves, we experience delayed recovery and the potential for permanent incapacity. And we experience decline in cognitive function, and disruption of normal regulatory mechanisms.

Maryann Spurgin has written extensively about this, and now apparently, Ron Davis has taken an interest in this aspect of ME/CFS.

Les noted that the normal treatment of blood samples before micrography was to wash them in saline and leave them for 30 minutes, but that during this process, the cells would revert to the biconcave discocyte shape, and the shape changes could no longer be observed. He therefore treated his samples in the same way that samples taken for immediate analysis during surgery are treated - they are ‘immediately fixed’ by being dropped in a solution that holds the shapes. Some research which claims to invalidate his observations has not followed this procedure.

Back to my early Positive Health articles...I certainly have advanced in my understanding of ME/CFS since I wrote in 2002. But even then I was perfectly clear that no form of psychotherapy was relevant to ‘curing’ ME/CFS, and my greatest fear, right from the beginning, was that some psychiatrist would come along and demand that I run up and down the garden.

In fact, my main aim in life has been, and continues to be to protect people with this disease from that fate.

My latest article, attacking the Lightning Process, explains in more detail. In it, I offer some bits of the NLP model and explain how you can try them out for yourself and come to your own conclusions about whether it makes any sense or not.

http://www.positivehealth.com/artic...nd-the-lightning-process-in-the-looking-glass

But as far as ME/CFS is concerned, what any psychotherapy should offer is a way to let go of the idea that exercise is useful, and allow yourself to take the rest that Ramsay and Acheson said were essential to any possibility of recovery.

I believe that we have a virus which is similar to the polio virus, which remains in our system, which continues to be stimulated by exertion, and keeps our immune system on red alert (or else incapacitated). After 32 years of illness, I get markedly better when I have been in bed for a few days, and when I do a bit too much, I get a sore throat....immune system activated. I think this matches with the experiences of many of us.

Our immune system needs enormous amounts of energy to function, hence ‘sickness behaviour’...and that apparently before the psychiatrists came along, patients who were prescribed complete rest did in many cases make a complete recovery...unlike the present time. Contrary to the Wessely lot, we need all the ‘sickness behaviour’ we can manage...it’s our immune system that has to do the fighting.

http://www.positivehealth.com/artic...-polio-connection-and-the-dangers-of-exercise

Hope this answers a few of the questions readers have raised! Thank you so much for giving so much thought to what I have said. My original Guest Editorial is no longer available via the original link but was republished in Positive Health:

http://www.positivehealth.com/article/cfs-me/a-radical-care-pathway-for-me-cfs

And finally, the biggest danger to us, and to any woman with a health problem that is exclusively or predominantly a ‘female complaint’ is the ‘medically unexplained sypmtoms’ diagnosis which if applied because our doctor isn’t competent or willing to explore our specific medical disorders, can actively prevent further diagnostic efforts, leaving us still ill, with diseases that could be life-threatening.
I chanced upon this post from 2017 & thought it worth linking here for newer members like me. Nancy’s article about NLP & the Lightning Process is insightful.
 
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