Predictive processing, predictive coding - a BPS theory of causation

[Trish]

This isn't right.

You are talking about 'a pain signal.' In fact, it is looking like it would be better to say 'a signal indicating tissue damage.' It is the brain that then decides whether or not to generate pain. Most of the time, it gets it right. You stand on a nail, it hurts because you need to know to get the nail out and clean the wound. But the brain can choose not to generate pain if needs be, for example if you are in an avalanche with a broken ankle and it is a priority to get to safety, the pain may kick in after you're out of harm's way. Talk to climbers and mountain bikers and they will confirm this happens sometimes. You can have a serious injury and no pain until hours later under some circumstances.

We think that the brain makes mistakes in the other direction. The idea is that if you are neurodivergent/have a sensitive nervous system/have experienced trauma, you might have a brain that generates more pain either more often or of more intensity. It's not conscious, it's not always even about your own conscious expectations although they likely have an influence. The idea is if you have experienced, eg, domestic abuse where you were in danger a lot as a child, pain will be activated in you far more readily than in others. We see support for that here: https://www.tandfonline.com/doi/full/10.1080/20008066.2023.2284025 You have a more sensitive alarm system through no fault of your own, it's just how the brain reacts to being in constant threat.

There have been people extending this work to symptoms like you see in M.E. Why in nature might a brain switch on symptoms when there is nothing physically wrong? It's protective, but it's a mistake that is being made. It's not things working properly. When we're ill, we retreat away from others and stay safe so the brain is switching that on sometimes when it might not need to. If we have experienced trauma or are sensitive/intelligent, the nervous system is likely oversensitive about generating this sickness response the same as with pain. This is why the brain retraining crowd talk about symptoms being real, they are trying to validate the fact the brain really is creating the symptoms, they aren't just patients thinking they're ill when they're not (which some psychiatrists have been accused of saying).

Why would PEM be delayed - no idea, but we know in autism and emotion processing that emotions can be felt a couple of days after they typically would in others and many with M.E seem to be neurodivergent, even if that's been missed. I think there's a link there that needs researching.

Some actual research on PP= https://papers.ssrn.com/sol3/papers.cfm?abstract_id=7233479

https://www.sciencedirect.com/science/article/pii/S1053811924002052

The old unhelpful beliefs theory was that people with ME/CFS feel bad with activity because they are expecting to. But try that in predictve theory: Expecting to feel bad. No bad signals coming in: RELIEF, BETTER THAN EVER

No. This is wrong. What it might be is:

Someone with M.E tries activity (and wants to enjoy it), they have experienced crashes in the past (this is a danger signal), the brain is oversensitive about protecting you, possibly based on previous harm, so the symptoms kick in and you come away with the unconscious learning that exercise make you ill. It is a loop once you're in it and can be hard to stop. You know last time you crashed and the crash was debilitating, you see others crash in your community, you believe there is some physical harm in you that hasn't yet been spotted---- this is all knowledge the brain pieces together to feel significantly under threat and so continues to generate symptoms when you try to exercise. You can really want to exercise but your brain will override things. It's a primitive response. If you have the odd experience of no symptoms, great, it can be helpful, but it may not override all the other experiences and the fear.

Brain retraining tries to interrupt the loop. It teaches safety in the body first, ideally (which is where I think GET fails as it skips this. Somatic tracking is a good tool that is unique to brain retraining that many find useful), once you have built in confidence of that, you can try moving more. You will likely get symptoms at first but you learn to experience them as your brain's opinion that you're in danger instead of anything being physically wrong. With gentle repetition, you can start to get experiences of exercising not creating symptoms and that builds more safety and more confidence.

We may not have lots of research but we do have thousands trying this work out and finding it helps them.

And these ideas explain much of severe M.E and why everything as diverse as talking/speaking/movement/some medications can provoke deterioration. It's all about what the brain is taking as danger and that can be quite individual. (And shows why some of you here can do some things physically while others can't and would crash. Because your brains have different priors and different levels of neurodivergence/sensitivity).

What about those of us who have not experienced any major trauma, either in childhood or as adults, who are not neurodivergent, and who did not develop any fear of exercise once we got ME/CFS, continued with normal life as far as possible repeatedly pushing through pain and other symptoms and triggering PEM, for years and gradually became sicker? None of that makes any sense in your model.

 

[Utsikt]

Adrenaline can't explain pain that doesn't kick in for hours.

It does explain the short term, though.

We = the brain retraining community

So you’re a provider of brain retraining?

Most people that get infections don't have either neurodivergence/trauma involved. But this is a question that needs more understanding. I don't have all the answers, no one does right now.

But most people that have those get infections and do not get ME/CFS.

Fully expecting to recover for years isn't the same thing as the brain understanding it is safe. Again, we need to understand this more, there are no easy answers right now. Many people do recover in those early years anyway.

Oh, so PP isn’t THE theory then? Why is it sold like it in brain retraining courses?

They say that this is the neuroscientific explanations of your symptoms. But at the same time, it clearly isn’t.

It's an interesting point about abrupt recovery, I guess the answer might lie in the fact with the brain is being updated with clear information it's safe?

But why doesn’t that happen to everyone? Why doesn’t it happen to the people with ME/CFS if their illness supposedly is gone and the brain receives normal signals from the rest of the body again?

But we see post chemo fatigue in cancer, etc, so there's a good example of symptoms continuing when underlying illness has gone.

This assumes that all of the illness is gone. We don’t know that chemo and radiotherapy doesn’t cause some changes elsewhere that persist after the tumor is gone.

I agree about it being important to disprove things but I'm not sure I can do that alone, I think people have got so excited by recoveries that the focus has been on trying to get more people well and not enough focus has gone into research.

There has been plenty of research into this, but you (as in the brain retraining folks) keep ignoring it. SIPCOV had negative results. MINIRICO had negative results according to a grant application by Wyller.

Hopefully that might change but research is expensive and time consuming so its not that simple is it?

It’s very easy to do research if you want to these folks have no issue getting funding. Yet the only brain retraining research that is done is done in the worst way imaginable. Like waitlist controls or no control conditions (the PRT study), only subjective outcomes and massive recruitment bias, to the point of kicking out an already approved participant because they found some negative posts by them about LP on SoMe, despite their assurances that they were willing to try it (Landmark’s ongoing LP study).

None of these excuses hold up. And certainly not selling the treatments (excuse me, self help programmes - please don’t fine me for false advertisement) without evidence.

 

[Utsikt]

Oh, and disproving an idea is easy. We’ve just done it - pointing out the flaws. There’s no reason to test everything in experiments.

 

[UkPoster]

What about those of us who have not experienced any major trauma, either in childhood or as adults, who are not neurodivergent, and who did not develop any fear of exercise once we got ME/CFS, continued with normal life as far as possible repeatedly pushing through pain and other symptoms and triggering PEM, for years and gradually became sicker? None of that makes any sense in your model.

Sometimes neurodivergence can be missed, Trish, is what I'd say to that and particularly in women. It's worth stopping and taking more time to see whether it may apply. It may not, but the number of recovered people who are realising they might have a foot on the neurodivergent spectrum is huge. And major trauma isn't needed, we sometimes need look for smaller things that might have just taught your brain it wasn't safe. A doctor working in this area asks you to work out whether you would want your child to have exactly the upbringing you had. Do you then turn around and say 'well x wasn't ideal?'

You may not have consciously developed fear of exercise, I believe you and I believe in the resilience of people in this community pushing through pain but can you see that pushing through pain and crashes is a threat to the brain? Particularly when it happens across a long period of time. How could the brain feel safe in those circumstances? If you are repeatedly triggering pain, believe me the brain is learning it isn't safe, even if you are feeling ok in yourself emotionally and pushing on.

So yes, it does make sense, with some nuanced understanding, in this model.

 

[UkPoster]

It does explain the short term, though.

So you’re a provider of brain retraining?

But most people that have those get infections and do not get ME/CFS.

Oh, so PP isn’t THE theory then? Why is it sold like it in brain retraining courses?

They say that this is the neuroscientific explanations of your symptoms. But at the same time, it clearly isn’t.

But why doesn’t that happen to everyone? Why doesn’t it happen to the people with ME/CFS if their illness supposedly is gone and the brain receives normal signals from the rest of the body again?

This assumes that all of the illness is gone. We don’t know that chemo and radiotherapy doesn’t cause some changes elsewhere that persist after the tumor is gone.

There has been plenty of research into this, but you (as in the brain retraining folks) keep ignoring it. SIPCOV had negative results. MINIRICO had negative results according to a grant application by Wyller.

It’s very easy to do research if you want to these folks have no issue getting funding. Yet the only brain retraining research that is done is done in the worst way imaginable. Like waitlist controls or no control conditions (the PRT study), only subjective outcomes and massive recruitment bias, to the point of kicking out an already approved participant because they found some negative posts by them about LP on SoMe, despite their assurances that they were willing to try it (Landmark’s ongoing LP study).

None of these excuses hold up. And certainly not selling the treatments (excuse me, self help programmes - please don’t fine me for false advertisement) without evidence.

No not a neuroscientist and also NOT a provider of brain retraining.

Why doesn't it happen for everyone? Why do you give the same chemo to lots of people with cancer and some are cured and some die? Why does a virus make some feel dreadful and some not? Why do some people with MS decline far faster than others? We don't really know yet, as much as you might like some nice black and white answers.

It's very easy to do research? Oh is it? I hadn't got that memo! I think you'll find it's not that simple. As one person, I'm not responsible for others' research having flaws but equally there will never be a perfect research study, I'm afraid.

 

[UkPoster]

@

I thought Garner's area of expertise was infectious diseases.

It is but he is still a fully qualified medical doctor and has the skill and training to understand scientific papers in other areas.

I'm pointing out we can't say 'I'm right because my teachers were clever.' And anyway, the study of infectious diseases involves study of the immune system.

 

[BrokenBeaktheBrave]

Most people that get infections don't have either neurodivergence/trauma involved.

What?!?! You can't just make stuff up that suits your narrative and expect people to take you seriously.

 

[BrokenBeaktheBrave]

What about those of us who have not experienced any major trauma, either in childhood or as adults, who are not neurodivergent, and who did not develop any fear of exercise once we got ME/CFS, continued with normal life as far as possible repeatedly pushing through pain and other symptoms and triggering PEM, for years and gradually became sicker? None of that makes any sense in your model.

Another neurotypical here who had a loving and safe childhood, adolescence and adulthood (raises hand).

 

[Trish]

Sometimes neurodivergence can be missed, Trish, is what I'd say to that and particularly in women. It's worth stopping and taking more time to see whether it may apply. It may not, but the number of recovered people who are realising they might have a foot on the neurodivergent spectrum is huge. And major trauma isn't needed, we sometimes need look for smaller things that might have just taught your brain it wasn't safe. A doctor working in this area asks you to work out whether you would want your child to have exactly the upbringing you had. Do you then turn around and say 'well x wasn't ideal?'

You may not have consciously developed fear of exercise, I believe you and I believe in the resilience of people in this community pushing through pain but can you see that pushing through pain and crashes is a threat to the brain? Particularly when it happens across a long period of time. How could the brain feel safe in those circumstances? If you are repeatedly triggering pain, believe me the brain is learning it isn't safe, even if you are feeling ok in yourself emotionally and pushing on.

So yes, it does make sense, with some nuanced understanding, in this model.

Wow, so you can do nuanced explanation of my illness better than I can, when you know next to nothing about me, my illness, or about science. The arrogance of your response is breathtaking.

Think it possible you are wrong.

 

[Utsikt]

No not a neuroscientist and also NOT a provider of brain retraining.

Thank you for clarifying.

Why doesn't it happen for everyone? Why do you give the same chemo to lots of people with cancer and some are cured and some die? Why does a virus make some feel dreadful and some not? Why do some people with MS decline far faster than others? We don't really know yet, as much as you might like some nice black and white answers.

Those are not the same questions.

If your hypothesis is that EBV causes MS and I was able to find cases of EBV-naive MS, your hypothesis would need major revisions. That’s essentially what my questions have done to the PP hypothesis.

It’s nice that you at least admit that the hypothesis is so full of holes and contradictions that it can’t possibly be used as an explanatory model for any disease.

It's very easy to do research? Oh is it? I hadn't got that memo! I think you'll find it's not that simple. As one person, I'm not responsible for others' research having flaws but equally there will never be a perfect research study, I'm afraid.

Yes, it’s very easy. Most of the issues have been figured out decades ago, if not hundreds of years ago.

It’s not easy to figure out the right answer to a question, but everything involved in setting up an experiment to test a hypothesis can be understood by high schoolers.

And I’m not asking for perfection. I’m asking for the bare minimum.

 

[Sean]

Think it possible you are wrong.

And what that would look like, and what its consequences would be.

 

[UkPoster]

Wow, so you can do nuanced explanation of my illness better than I can, when you know next to nothing about me, my illness, or about science. The arrogance of your response is breathtaking.

Think it possible you are wrong.

I know nothing about you, but I do know what many are saying when they recover and that is they realise they have some element of neurodivergence and had never spotted it before. Lots of them are clever and had ruled it out before. It's not arrogance, I'm trying to share my learnings with you in case its helpful. You are free to say they don't apply but I'm not sure why you need to bring arrogance into things. Why jump to insults?

 

[Trish]

d yes but sometimes people have a part of them that want to get better and a part of them that is scared to. Many people with M.E have told me that's the case for them, so I respect that this is part of things for many (but not all).

Really, can you put an approximate number on this?

Are these stories told before any treatment, or after?

Given that it seems that part of brain retraining is telling people they are being helped to overcome their brain's fear of activity (and implied, fear of recovery), it's important to include in such data whether the information was collected before or after treatment.

I have never, in all the reports I have read and interactions with hundreds of people with ME/CFS, come across anyone who says they are scared to recover.

It's possible that there are a tiny proportion of people with ME/CFS who are indeed scared to recover, and are therefore attracted to brain retraining to try to overcome that fear, so any sample you gather in brain retraining circles will be skewed.

Your conclusion that 'this part of things for many' has no sound evidential basis.

 

[rvallee]

And what that would look like, and what its consequences would be.

There is no need to imagine it, we've seen its consequences for decades, and things are as bad as they have ever been. This is what it looks like, and consequences are obviously disastrous.

 

[Hutan]

We have moved some posts to a new discussion thread:
How to design a good clinical trial of brain retraining

 

[MrMagoo]

Is the brain itself sentient? Can a brain feel unsafe?
No offence, but if this is the level of biology brain training is dealing in, I have some magic beans for sale.

Why do people who recover through brain training all seem to work as brain trainers?

Why do brain training enthusiasts constantly interject in spaces where people disagree with their methods?
I don’t believe in Christianity but I’m not hanging around on IloveJesusHeIsMySaviour.com telling everyone I feel sorry for them believing in a fairy tale and they would be happier if they just agreed the bible was written hundreds of years after his adventures on earth.

 

[Axel]

can you see that pushing through pain and crashes is a threat to the brain? Particularly when it happens across a long period of time

No. I get the impression that the brain loves it. I’d say that in our case, the problem is the lack of progress and even regression, which are perceived consciously. Suffering is so closely linked to pleasure that it’s extremely difficult to imagine that the brain has any notion of danger associated with these sensations.
If anything, I imagine the lack of feedback-related to gain poses a greater inherent risk.

You see, as our thoughts do not revolve around beliefs, you can change your mind and you won’t fall ill again. We can assure you of that.

 

[UkPoster]

Is the brain itself sentient? Can a brain feel unsafe?
No offence, but if this is the level of biology brain training is dealing in, I have some magic beans for sale.

Why do people who recover through brain training all seem to work as brain trainers?

Why do brain training enthusiasts constantly interject in spaces where people disagree with their methods?
I don’t believe in Christianity but I’m not hanging around on IloveJesusHeIsMySaviour.com telling everyone I feel sorry for them believing in a fairy tale and they would be happier if they just agreed the bible was written hundreds of years after his adventures on earth.

Good question. It's not about magic beans, it's about how we've evolved to survive.

Have you seen the gorilla/basketball experiment?
Have you read Blink? https://www.amazon.co.uk/Blink-Power-Thinking-Without/dp/0141014598
Both show support for the idea of a brain that is assessing the environment for reasons of safety and only some things come to conscious awareness, depending on who you are, your temperament and what you've been through. If we didn't have this, we'd be dead.

Why am I here? Because brain retraining isn't like religion, there are so many scientists/neuroscientists/doctors/psychologists etc etc who are on board with it. We have theory, there is some research (more is obviously needed). You don't get that with Jehovah's Witnesses etc. The idea of the mind-body connection is mainstream. You guys are the ones who are at odds with medical consensus, even if you're very sure you're right. I'm not trying to provoke anyone, I'm just here to talk to you and to see if you are open to discussing it. You don't have to change your mind, but it's not harmful to talk about it, is it? And perhaps you'll come away with a bit more understanding of my position. And I'll understand you too. Things improve when different sides understand one another.

 

[Trish]

Have you read Blink? https://www.amazon.co.uk/Blink-Power-Thinking-Without/dp/0141014598

Yes, I read it years ago. My memory of it, and I've just googled a few reviews that confirm this, is that its a pop science pile of mildly entertaining anecdotes that seem at first glance to build to a coherent theory, but are actually just a pile of anecdotes Malcolm Gladwell has colllected to fill a book that sells. It's not science.

If that's the level of 'science' being used to explain brain retraining, I think you have a problem.

 

[Trish]

We have theory, there is some research (more is obviously needed).

So instead of telling us about anecdotes of people whose stories we aren't able to verify or even see, because they are rightly kept private, and which therefore gets us nowhere, how about presenting us with a coherent account of that theory, a description of what brain retraining actually involves, and linking the research so we can review and discuss it.