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

Since this thread is ongoing, thought I'd share my experience with DNRS (dynamic neural retraining system), which I finished recently.

There are a few different packages with different things included, I did the cheapest which is just a series of videos but there are also ones that offer access to online groups or a session with a coach.

"Rounds" of DNRS is basically saying a series of mantras out loud while walking in a circle (I did it laying down) and then a calming visualization technique where you imagine a happy memory for a few minutes and are supposed narrate it aloud and then imagine a future memory where you're healthy. That's it, that's the program.

The mantras you repeat are 1: you say stop stop stop or change change change while smiling 2: you say my brain is stuck in a rut and it's sending my mind and body false messages (you're supposed do some gesture with each mantra) 3: you say due to over-firing of protective mechanisms in the limbic system, I had symptoms that in the past led to unhealthy coping behaviors (mouthful)

4: you say but now I know that is all due to cross wiring in the nervous system and I am choosing to rewire my brain 5: then you step into your "higher self" and tell yourself you're doing a great job and to keep going 6: you thank your limbic system for all its done for you so far but then say honey you were working with the wrong information and we're running a new program now.

7: you step back into your higher self and ask how you are choosing to be now 8: then you repeat your proclamation which goes something like "I am happy and healthy and strong everywhere all the time forever." Then steps 9 and 10 are the past and future visualizations.

You are supposed to do this every day for an hour for six months before you know for sure that it isn't helpful. In their defense, they do offer a partial refund after a certain period of time, which does show some degree of confidence in their product.

There are also components and steps involved, gradually increasing and exposing yourself to activities and then doing full rounds of DNRS if you're having a hard time, which could include doing them in public. And also "elevating your emotional state" which could include making a mood board full of happy pictures and dreams.

Oh and the first step is to acknowledge the role played by your brain in creating symptoms, apparently just understanding this helps people feel better, didn't for me. There were also lots of wide-eyed testimonials, some stranger than others.

The unpublished in-house study that @dave30th mentions probably comes up because it comes up in program as evidence of the theory. I remember thinking that the study sounded very unscientific and marketing-y.

Couple thoughts on all this: I don't think we (the skeptics) do ourselves any favors to attribute ALL the recovery stories from brain retraining to natural recovery or to say the person just had psychosomatic issues. That's certainly the case for some, but I think some people probably do recover from unexplained chronic illness from these sorts of things.

I don't know why, and obviously there's no good evidence for it, and there are also remarkable recovery stories from other alternative medicine things. Maybe it's just any form of change for some people opens the door to recovery, I have no idea, it should probably be studied.

The main concerns of this approach for me are 1: the hostility to biomedical science, which seems so central to this whole framework that it's almost part of the practice. 2: the hostility to patient advocates, who just by talking about how bad the illness is are causing harm by perpetuating the whole fear response and all that bullshit. 3: the fact that if it doesn't work for you they'll just say you were doing it wrong.

There are other concerns. But the pressure to do the group settings and the insular vibe of it all strikes me as social pressured brainwashing. I asked some people who claimed to recover from DNRS what actual aspect of the program worked for them and typically they point toward the group stuff and working with a coach more than any aspect of the practices. Hm?

Apologies for the long post but that was my experience and my point of view, I may say more if I think of anything.
 
They are an ever evolving organization, arguably scoring very high on psychological flexibility:
In case you are not familiar with David D. Clarke, MD, he‘s the president and a co-founder, together with Howard Schubiner, MD and many others, of

- The Psychophysiologic Disorders Association (PPDA)
Oh, no, wait, I meant
- The Association for the Treatment of Neuroplastic Symptoms (ATNS)
Ahh, I‘m too slow, I was supposed to say
- https://neuroplastic.org/
Hey, no new name for the association, just a new domain name?! This revolutionary new field of medicine seems to settle down.
 
The Recovery Hub:
'To continuously aim for ‘full-recovery’ can be exhausting in itself. It can also be a continuation of the attitudes that got us there in the first place.'


So what is it? - Aim for recovery, but not continuously cos that can be exhausting - and continuously aiming for recovery can involve repeating the 'attitudes' that (according to The Recovery Hub) made you sick in the first place. ?????

Please make it make sense.
Before I reached this sentence my thought was this is turning into a Monty Python sketch :laugh:

Please make it make sense
They're definitely making heavy use of personality types more prone to severity of illness. It's certainly more mind than body.

I began wondering what the Countess of Mar would make of this and looked up an old UK House of Lords debate (because of course Goldsmiths report is a "politically vital" and "culturally innovative" piece of work) but these themes of argument are all too familiar aren't they. I don't think we need to have Goldsmiths revisionists version of historical fact parading itself before UK NHS guidance. So a full critique of it is the first job.

Here's the Hansard debate from 2002. Long read but worth a refresher


And we'll start by pointing out to these academics that in the UK there is a long term fluctuating condition which the Department of Health calls ME/CFS, not chronic fatigue or chronic fatigue and it's syndromes!
 
Thank you for sharing.
Has there been anything new that you learned in that course that you are going to continue to use in the future?
Maybe a new breathing technique?
Nope. I mean there aren't any breathing techniques, I was really expecting some more interesting practices. I will continue doing the DNRS rounds (as ridiculous as they sound) for a few months. It's kind of interesting, the visualization can be kind of nice, but it gets stale pretty quickly. The hypothesis that there's some neurological safety mechanism gone awry with this illness is not that ridiculous to me, but I don't really know how any of this will change that process.
 
Aim for recovery, but not continuously
As much as I understand these things, I think the the idea is to remove that pressure from your self that this must work for me, I must get well and instead be curious about experimenting with tools and techniques to see what shifts.

Recovery is not the goal directly, but by improving nervous system regulation, relaxing etc you improve rest, and by understanding your emotions and processing them or, letting them the move through you or whatever emotions do, instead of holding on to them, you create conditions for your body to be less tense, less in fight/flight which may lead to recovery.

That is my understanding of the mind body approach, not necessarily any specific brain training models or programmes
 
Nope. I mean there aren't any breathing techniques, I was really expecting some more interesting practices.
Fascinating.
The marketing around the DNRS technique almost made me try it at one time.
Glad I didn’t!

The mantras you repeat are 1: you say stop stop stop or change change change while smiling
From a psychology/neurology standpoint, isn’t this complete non-sense?
I think I remember that saying to yourself "don’t" has the complete opposite effect of what you want to achieve and that there are also studies that show that?
Otherwise you‘d expect people with depression to relentlessly shout "happy, happy, joy, joy!" on repeat?
Why do we not hear criticism from specialists in the field?


For comparison to your DNRS experience, the free bettermindbody.org website provides short howto’s for all these techniques:

Breathwork​

Using the breath as a direct signal to the autonomic nervous system.​

Emotional Work​

Identifying, expressing, and releasing suppressed emotions that may be keeping the nervous system in a chronic state of threat.​

Exposure Therapy​

Gradually and safely reintroducing activities, movements, or situations that have become associated with symptoms — teaching the brain they are no longer dangerous.​

Interruption Strategies​

Breaking the feedback loop between the brain and the body when a symptom arises.​

Journaling​

Using written reflection to process thoughts, track patterns, and build self-awareness as part of your recovery practice.​

Mapping Nervous System States​

Understanding which state your nervous system is in (Ventral, Sympathetic, Dorsal) so you can respond with the right tool.​

Meditation​

A practice that slows brainwave activity, gently moves the nervous system out of distress — and opens the door to awareness of thoughts, beliefs, and emotions. Only when we become aware can we begin to change.​

Mood Elevation​

Deliberately lifting your mood as a direct nervous system intervention — using joy, laughter, and positive focus to shift the brain's internal chemistry and reduce its threat response.​

Provocative Testing​

Also known as Imagination Testing — using the imagination to intentionally bring to mind a thought, memory, or scenario that typically triggers symptoms, in order to demonstrate to the brain that the trigger itself is safe.​

Reappraisal​

Pain Reprocessing Therapy's core technique: relabeling symptoms as a central nervous system process that is nondangerous — changing the way the brain understands and relates to sensations.​

Somatic Tracking​

The most effective way to communicate a message of safety to your brain is to mindfully attend to the physical sensations in your body. Somatic tracking teaches you to observe those sensations with curiosity and safety rather than fear and alarm.​

Somatics​

Body-based practices that work directly with the nervous system through movement, sensation, and breath to release stored tension and build a felt sense of safety from within.​

State Shifting​

The goal is to gently support your nervous system in moving toward greater flexibility and more time in a ventral vagal (safe and connected) state.​

Vagus Nerve Toning​

Simple, short practices that strengthen the vagus nerve — your body's direct pathway out of survival mode and into safety, calm, and connection.​

Visualizations​

Using the imagination to create new experiences of safety, health, and ease that the brain registers as real — rewiring expectations and building new neural pathways.​
 
Couple thoughts on all this: I don't think we (the skeptics) do ourselves any favors to attribute ALL the recovery stories from brain retraining to natural recovery or to say the person just had psychosomatic issues. That's certainly the case for some, but I think some people probably do recover from unexplained chronic illness from these sorts of things.
Thank you for sharing your experience with the programme.

I want to note that it’s impossible to prove a causal effect of the programme based on anecdotes. We are not doing ourselves any favours by «keeping an open mind» as some would say, when history has shown us that virtually zero of these kinds of interventions have any effect whatsoever. We’re talking millennials of people trying to cure themselves or others through mind over matter, prayers, shamanism, etc.
 
Recovery is not the goal directly, but by improving nervous system regulation, relaxing etc you improve rest, and by understanding your emotions and processing them or, letting them the move through you or whatever emotions do, instead of holding on to them, you create conditions for your body to be less tense, less in fight/flight which may lead to recovery.
That makes a lot of sense, thanks for sharing!
 
Thank you for sharing your experience with the programme.

I want to note that it’s impossible to prove a causal effect of the programme based on anecdotes. We are not doing ourselves any favours by «keeping an open mind» as some would say, when history has shown us that virtually zero of these kinds of interventions have any effect whatsoever. We’re talking millennials of people trying to cure themselves or others through mind over matter, prayers, shamanism, etc.
True.
 
A bit of a rant:

I firmly believe that our lives would be much better if people, patients, carers and healthcare practitioners didn’t push (or chase) unevidenced treatments. I often hear talk about maintaining hope, but that argument crumbles when you look at examples of e.g. acquired blindness or deafness where everyone accepts that we currently have no treatments. It sucks, but it’s possible to learn to accept it, and society can adapt to accommodate the needs. And having false hope crushed repeatedly is arguably far more harmful than having no hope or realistic, but long term hope.

The illusion of there being effective treatments out there not only robs patients of the opportunity to grieve and accept, but it also relieves the others of their responsibility to actually help them. And when the treatments actually are harmful it gets even worse. That’s not even accounting for the guilt and despair the programmes like LP and DNRS causes, which keep contributing to suicides and assisted dying.

I don’t blame patients for seeking them out, and I can understand why others might go looking for them as well. The blame lies with the people that crated and that profit of these interventions, and the people that really should know better, like the professionals. Although, as JE is keen to point out, the duty to do no harm applies to everyone, even patients.
 
Fascinating.
The marketing around the DNRS technique almost made me try it at one time.
Glad I didn’t!


From a psychology/neurology standpoint, isn’t this complete non-sense?
I think I remember that saying to yourself "don’t" has the complete opposite effect of what you want to achieve and that there are also studies that show that?
Otherwise you‘d expect people with depression to relentlessly shout "happy, happy, joy, joy!" on repeat?
Why do we not hear criticism from specialists in the field?


For comparison to your DNRS experience, the free bettermindbody.org website provides short howto’s for all these techniques:
This is something I encountered with the program. When I started to visualize some happy memory, or told myself I was safe, I would have a paradoxical reaction. Like the back of my mind saying "If you're so safe then why do you have to tell yourself that"
 
A bit of a rant:

I firmly believe that our lives would be much better if people, patients, carers and healthcare practitioners didn’t push (or chase) unevidenced treatments. I often hear talk about maintaining hope, but that argument crumbles when you look at examples of e.g. acquired blindness or deafness where everyone accepts that we currently have no treatments. It sucks, but it’s possible to learn to accept it, and society can adapt to accommodate the needs. And having false hope crushed repeatedly is arguably far more harmful than having no hope or realistic, but long term hope.

The illusion of there being effective treatments out there not only robs patients of the opportunity to grieve and accept, but it also relieves the others of their responsibility to actually help them. And when the treatments actually are harmful it gets even worse. That’s not even accounting for the guilt and despair the programmes like LP and DNRS causes, which keep contributing to suicides and assisted dying.

I don’t blame patients for seeking them out, and I can understand why others might go looking for them as well. The blame lies with the people that crated and that profit of these interventions, and the people that really should know better, like the professionals. Although, as JE is keen to point out, the duty to do no harm applies to everyone, even patients.
With you. I think the main takeaway from all these guff, the WIRED article, all these programs, this discourse, is that people are basically desperate for answers, and not just patients. I think AL wrote the piece thinking that this could be a way forward and that's more enticing as a journalist than "this horrible illness has no treatment yet," but that's the reality.
 
told myself I was safe, I would have a paradoxical reaction. Like the back of my mind saying "If you're so safe then why do you have to tell yourself that"
This made me laugh, as I have PTSD and trying to say to my body "I'm safe right now" I can almost hear my body scoffing at me and saying; are you kidding, after everything?! I absolutely do not believe you!!

I have had to start much much smaller; I am safe to take this breath.
 
Fascinating description! Thank you!

I don't think we (the skeptics) do ourselves any favors to attribute ALL the recovery stories from brain retraining to natural recovery or to say the person just had psychosomatic issues.
cross wiring in the nervous system and I am choosing to rewire my brain
As we discussed above in the thread, the term "psychosomatic" is not only for completely imagined symptoms. It is also for conditions with symptoms that in various ways are generated or maintained by the psyche. So I'd say that a condition which is caused by "cross wiring in the nervous system and I am choosing to rewire my brain" is psychosomatic by definition.

That doesn't mean that it can't be a serious condition, of course.

And I agree with you: It is not unreasonable that in such conditions those psycho-behavioural techniques that they call "brain retraining" might be helpful for some people.
 
As much as I understand these things, I think the the idea is to remove that pressure from your self that this must work for me, I must get well and instead be curious about experimenting with tools and techniques to see what shifts.

Recovery is not the goal directly, but by improving nervous system regulation, relaxing etc you improve rest, and by understanding your emotions and processing them or, letting them the move through you or whatever emotions do, instead of holding on to them, you create conditions for your body to be less tense, less in fight/flight which may lead to recovery.

That is my understanding of the mind body approach, not necessarily any specific brain training models or programmes
I think it’s a Trojan horse, the first part is as you say (and found in yoga and meditation etc) the second part is the concern because the brain training types have some “creep” towards controlling your thoughts, telling yourself it’s safe and because it’s safe you dont then need to feel pain etc etc until you’re being brainwashed into saying everything is fine.

If it stayed in the “knit your own yogurt and salute the sun” arena
It would be fine (and I am something of a hippy myself so I say it with love and only a small, wry smile). I like an om and a breathing exercise.

If it stayed in the “here are scientific evidences of how the brain sends the body signals and vice versa” it would be fine. It starts with a reasonable preposition but it always descends in to making the leap that the brain misfires or the thoughts are trauma in your lymph glands or some bunkum.

It’s all good until they jump the shark. After that it’s all “but how come some people say it cured them, you can’t disregard that”

Well I dunno why. And neither do they.
 
Fascinating description! Thank you!



As we discussed above in the thread, the term "psychosomatic" is not only for completely imagined symptoms. It is also for conditions with symptoms that in various ways are generated or maintained by the psyche. So I'd say that a condition which is caused by "cross wiring in the nervous system and I am choosing to rewire my brain" is psychosomatic by definition.

That doesn't mean that it can't be a serious condition, of course.

And I agree with you: It is not unreasonable that in such conditions those psycho-behavioural techniques that they call "brain retraining" might be helpful for some people.
I think it's true this stuff is geared for people with psychosomatic issues, even though they try to distance themselves from that. But from listening to a lot of recovery stories of various programs, I think at least some of those people probably did have physical illnesses and genuinely benefited from calming down their nervous system or whatever mindset/lifestyle shift. I could be wrong. There's obviously a lot of weirdness and sketchy incentives. But some of these stories seem more credible to me than others.
 
If it stayed in the “here are scientific evidences of how the brain sends the body signals and vice versa” it would be fine
Agreed. I think there is far too much overreach, which makes me uncomfortable, particularly as there are definitely some things which could be helpful to some people.

It's the absolutes, and requirements to completely believe that bother me
I like an om and a breathing exercise.
This made me chuckle, as I never thought I would be that person but here I am, breathing exercises every morning, a gentle stretch and grown up cereal for breakfast
 
Agreed. I think there is far too much overreach, which makes me uncomfortable, particularly as there are definitely some things which could be helpful to some people.

It's the absolutes, and requirements to completely believe that bother me

This made me chuckle, as I never thought I would be that person but here I am, breathing exercises every morning, a gentle stretch and grown up cereal for breakfast
The om really helps my voice loss/vocal cord dysfunction, they said to hum but I find I can om and double the benefits with one effort.

That’s adaptive pacing and efficiency, please sign up for my £600 course
 
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The om really helps my voice loss/vocal cord dysfunction
Intriguing. I did not know this, I've had a lot of issues with my voice since I had covid.

I am fortunate to live alone, so I can sing very loudly which I find very helpful

That’s adaptive pacing and efficiency, please sign up for my £600 course
:laugh: genius
 
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