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

[Sean]

an overactive primitive alarm system.

What is the evidence that

1) it is "overactive", and​

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2) is the primary problem, not an appropriate response to, nor an unavoidable consequence of, a more fundamental and serious problem, and​

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3) is amenable to 'brain retraining' that consistently delivers a meaningful practical benefit, let alone a cure, to ME/CFS patients?​

Because I have yet to see any evidence for that in the quarter century I have been paying attention to the science on ME/CFS, et al.

 

[Peter T]

Copied post

The point of this thread is that this is a formal health clinic specialising in the management of ME/CFS apparently recommending an unevidenced psycho-behavioural treatment. These arguments would equally apply to recommending a drug treatment based on an underpowered physiological study of ME/CFS, and if you look through the site you will find many objections to unevidenced use of various medical treatments, sacro cranial surgery being such a treatment under current discussion.

@Friendswithme, obviously you genuinely believe that brain training is potentially curative for ME, but for an official body to recommend this as a treatment there needs to accepted research evidence. There are many people out there that equally believe their preferred treatment works and will be able to cite anecdote and snippets of science in support, but would you have the Bateman Horne Center circulating information on replacing all filings containing dental amalgam (I am showing my age with this one), going on raw food vegan diets, have spinal surgery fusing the upper spine to the skull, undertake the Lightening Process, using which ever supplements are currently in and (my personal favourite) having an exorcism.

You might argue that brain training is more respectable than any of those, however psycho behavioural interventions have been extensively studied in ME/CFS and all we can conclude is that even the most successful only have achieved temporary changes in questionnaire filling behaviour.

Anyone with long-standing ME/CFS regularly experiences well meaning suggestions for treatments from friends and acquaintances, one that always gets me riled is ‘have you tried yoga?’ as I was within weeks of qualifying as a yoga teacher when the infection that triggered my ME struck, however we expect more from the Bateman Horne Center. Most of us here are with the 2021 NICE guidelines that we currently have no evidence for any curative treatments of any sort, regardless of any beliefs about aetiology.

 

[Grigor]

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.

As a patient rep working closely with biomedical researchers here in the Netherlands, I can confidently say they do see signs of real damage in the body and the findings align with what we see elsewhere. Yes, it's preliminary, for the moment unpublished, and the research is still developing, but dismissing it just because the studies are small doesn’t mean there’s nothing there. That kind of thinking is both problematic and misleading.

I do think there are some people who might already be on the path to recovery, improving, or maybe more prone to "catastrophizing" — and they could maybe benefit from some of the brain retraining techniques. But to claim there’s no physical damage at all in M.E.? I know it's a cliché, but the only thing I can say is: absence of evidence isn’t evidence of absence.

 

[Friendswithme]

I'll do my best to answer everything so please bear with me if I miss any responses. I'm just one person!

That sounds like what Grigor said. He said the idea is that the brain is misinterpreting the signals, not "people".

No except that's not really it. The brain actually creates the symptoms.

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»?

Most (I'm sure not all) brain retraining programmes and techniques are based on the work of John Sarno. So while some people will be saying different things, most people sharing about it all sing from the same hymn sheet. I know a lot of people online who promote it and I rarely see things that make me go 'where did that come from?'

And who is the brain sending symptoms as warning signals to?

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.

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?

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. My friend's child had an ultra rare medical condition that nearly killed her. It baffled her doctors for 3.5 weeks and then they unravelled it. It's a highly complex condition of the lymphatic system that only a handful of people alive have. They had to go worldwide to hunt down answers but it still only took 3.5 weeks with modern scientific understanding to unpick it. There is very little chance (logically) that there is something physically going wrong in the body of someone with M.E. We have very good medical understanding these days in a way we didn't before.

What do you mean by «demonstrates causality»?

It is natural to find things that are wrong when you look at using statistics and false positive results in trials. But just because a physical abnormality is thrown up in a study or two, doesn't mean that thing is the cause of M.E. It's just - test enough humans and you will find things. And if you have real symptoms where you're crashing all the time and are in pain, exhausted, dizzy, whatever else, you will spot differences in tests. It doesn't rule out the fact the brain generated the symptoms in the first place. See for example this centre now recommending brain retraining because clinicians are seeing POTS symptoms significantly improving for some - we'd all agree here that POTS is real and can be objectively observed.

how can the brain behave abnormally if there is nothing physically wrong with the body?

How? It is incredibly well established that it can (if you look at immunology and pain science). The brain is known to make predictions and make errors. The Immune Mind by Lyman explains the evidence that this happens. Sorry, I know you don't like it here when I recommend books you don't want to read but actually I was flicking through it the other day and thinking what a shame that is as it might provoke new avenues of research for you all as a community. It's a very good book.

The brain is trying to protect us. It is adaptive that it can generate symptoms, e.g. you get a bad virus, you also get 'sickness behaviour' including losing motivation and the desire to be around people. We evolved to separate ourselves from the herd to prevent spreading our illness. So that response can also kick in when we're not actually ill. The brain is thought to be doing its best to protect us in a crude way when it might not need to.

Do the patients in both brain retraining and anti-pain castastrophizing experience less pain and other symptoms due to these interventions? No. There is the placebo effect of having attention and emotional reassurance from an authority figure in healthcare, a shaman, if you will.

Except they do. The Boulder back pain study showed that as one (imperfect) example. The many anecdotes worldwide from people saying their symptoms have eased or gone do too. I did my brain retraining work through an online programme, I had no 'emotional reassurance' from a doctor in front of me. I did the work, I got better. Genuinely better. Which is why I'm here trying to talk to you all.

The patients are socialized not to be in distress in front of the health professions. That's the aim, also.

No, that seems a very cynical approach to things. I know there are some bad doctors out there but brain retraining is supposed to be about getting rid of actual symptoms. Why is it so popular with so many patients? Because they've gone through it and their symptoms go. My symptoms went. I went from having a shit quality of life to being healthy. I'm not faking it in front of doctors, I don't care about doctors. I avoid them, I'm not a fan of them.

 

[Sean]

What is the evidence that

1) it is "overactive",

And please provide a robust definition of overactive, in this context.

 

[Utsikt]

The human the brain sits in.

But fatigue is not experienced by the «human», it’s experienced by the brain, by neurons. How can the brain send warning signs to «them human the brain sits in» then? That’s a dualist approach to biology, you might as well start talking about souls.

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.

Are you familiar with the Zhang paper? Or DecodeME?

And have you seen this list of basic medical research that has not been conducted for ME/CFS yet?

I get the impression that you don’t quite understand the sorry state that ME/CFS research has been in, and still is to a large degree.

My friend's child had an ultra rare medical condition that nearly killed her. It baffled her doctors for 3.5 weeks and then they unravelled it. It's a highly complex condition of the lymphatic system that only a handful of people alive have. They had to go worldwide to hunt down answers but it still only took 3.5 weeks with modern scientific understanding to unpick it.

This is an irrelevant comparison because it’s about diagnosing a known condition. It has nothing to do with figuring out what ME/CFS is.

There is very little chance (logically) that there is something physically going wrong in the body of someone with M.E.

I think I have shown the flaws with this argument above.

We have very good medical understanding these days in a way we didn't before.

We really don’t. It’s better than before, but we’ve barely scraped the surface of human biology.

How? It is incredibly well established that it can (if you look at immunology and pain science). The brain is known to make predictions and make errors. The Immune Mind by Lyman explains the evidence that this happens. Sorry, I know you don't like it here when I recommend books you don't want to read but actually I was flicking through it the other day and thinking what a shame that is as it might provoke new avenues of research for you all as a community. It's a very good book.

I’m going to refer to this comment by Snow Leopard. Predictive coding has largely been disproven for those areas.

 

[Arnie Pye]

I've always been dubious about brain retraining. What little I've read seems to suggest that the retraining physically changes the brain in some way, but nobody actually says what those changes are.

If we take some fairly common real-life situations that change behaviour quite drastically, it would be interesting to know if any physical changes have occurred that can be physically seen and measured e.g. giving up smoking, giving up alcohol, giving up gambling.

The first two, giving up smoking and alcohol, will actually cause physical changes in the body and/or brain because the person giving up is actually changing what their body has to deal with i.e. there will be no more nicotine and no more alcohol.

The last one - giving up gambling - does not involve stopping a noxious substance going into the body. If there are no physical changes that can be measured in brain and/or body when someone stops gambling then I really find it unlikely that GET or CBT changes the brain at all.

 

[forestglip]

'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.

That sounds like what Grigor said. He said the idea is that the brain is misinterpreting the signals, not "people".

No except that's not really it. The brain actually creates the symptoms.

After misinterpreting harmless signals from the body, such as exercise, as harmful, right?

 

[SNT Gatchaman]

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. My friend's child had an ultra rare medical condition that nearly killed her. It baffled her doctors for 3.5 weeks and then they unravelled it. It's a highly complex condition of the lymphatic system that only a handful of people alive have. They had to go worldwide to hunt down answers but it still only took 3.5 weeks with modern scientific understanding to unpick it.

On that brief description, I'm going to take a punt that that was Gorham's disease (aka "vanishing bone disease") and that it might be successfully treated with sirolimus (rapamycin). Whatever the actual diagnosis, fingers crossed for the best outcome for your friend's little girl.

There is very little chance (logically) that there is something physically going wrong in the body of someone with M.E. We have very good medical understanding these days in a way we didn't before.

The problem is that you're assuming the work has been done, and it hasn't. ME/CFS has been systematically sidelined from all this very good medical understanding other conditions have developed. To take the example of Gorham's above: 15-20 years ago that was typically a rapidly fatal diagnosis, usually from uncontrollable chylothorax with respiratory and metabolic decompensation. Now it's manageable. Curative treatments would be expected in the future as our knowledge progresses.

It will be the same with ME/CFS. One major difference I'll predict will be the embarrassment associated with pinning down some of the findings, that clearly could and should have been established decades ago.

 

[Jesse]

No except that's not really it. The brain actually creates the symptoms.

Possibly. But there has to be something that triggers the brain to create these symptoms. We don't know what that is and it might very well be through the immune system as @Jonathan Edwards suggested in his latest paper.

The brain is trying to protect us. It is adaptive that it can generate symptoms, e.g. you get a bad virus, you also get 'sickness behaviour' including losing motivation and the desire to be around people. We evolved to separate ourselves from the herd to prevent spreading our illness. So that response can also kick in when we're not actually ill. The brain is thought to be doing its best to protect us in a crude way when it might not need to.

The problem here is that you're assuming that we can override these signals that make use feel sick and retrain our brain to ignore them. Obviously neuroplasticity is a thing and there is some evidence that exposure therapy can work for anxiety-related disorders, but that's completely different from sickness behaviour and ME/CFS. Do you think you can retrain someone's brain to never feel sick during a severe flu?

The many anecdotes worldwide from people saying their symptoms have eased or gone do too. I did my brain retraining work through an online programme, I had no 'emotional reassurance' from a doctor in front of me. I did the work, I got better. Genuinely better. Which is why I'm here trying to talk to you all.

I'm happy to hear that you and others have found success using brain retraining techniques, but you should be careful using that as evidence. There is a huge amount of survivorship bias in those anecdotal stories. There's at least a many people that have tried this approach and gotten worse. I will also direct you to my previous comment: why was CBT and GET not effective in the PACE trial?

 

[Sean]

It will be the same with ME/CFS. One major difference I'll predict will be the embarrassment associated with pinning down some of the findings, that clearly could and should have been established decades ago.

Yes, it is going to be interesting to see how far back the technology and knowledge existed to have enabled the basics to be revealed.

If it turns out it enough of the basics could have been known decades back there will be hell to pay.

 

[Adrian]

As a patient rep working closely with biomedical researchers here in the Netherlands, I can confidently say they do see signs of real damage in the body and the findings align with what we see elsewhere. Yes, it's preliminary, for the moment unpublished, and the research is still developing, but dismissing it just because the studies are small doesn’t mean there’s nothing there. That kind of thinking is both problematic and misleading.

Interesting when you say damage do you have a feeling for is this a different state (i.e. some process is running in a different way and hence causing problems) or temporary damage (for example, a cell gets damaged in some way but repairs itself or is replaced) or permanent damage.

 

[Adrian]

No except that's not really it. The brain actually creates the symptoms.

I'm wondering what you mean by this - is this certain synapses firing that shouldn't in which case would some additional signal be noticable on a fMRI scan? Would something show for example if you compare fMRI scans with/without PEM as the symptoms would change.

Or would there be other ways of testing this hypothesis (or refining it into a more testable statement)

 

[Adrian]

There have been lots of enquiries into what might be going wrong in the body in M.E and nothing significant has been found.

There have been a number of small experiments but I would say there hasn't been that much research and very little at a scale likely to find problems (very little funding). Small experiments have pointed to potential issues.

We've had multiple diseases where nothing has been found until new techniques come along or new ways of thinking. Personally I think blood samples at random times over random individuals is unlikely to find something as it doesn't take account of the dynamic nature of ME. I suspect we need research looking at how things change within one individual under different exertion conditions (i.e. understanding PEM) and there is interesting work in this area now which I seem to remember has some interesting potential insights.

 

[rvallee]

I've always been dubious about brain retraining. What little I've read seems to suggest that the retraining physically changes the brain in some way, but nobody actually says what those changes are.

If we take some fairly common real-life situations that change behaviour quite drastically, it would be interesting to know if any physical changes have occurred that can be physically seen and measured e.g. giving up smoking, giving up alcohol, giving up gambling.

The first two, giving up smoking and alcohol, will actually cause physical changes in the body and/or brain because the person giving up is actually changing what their body has to deal with i.e. there will be no more nicotine and no more alcohol.

The last one - giving up gambling - does not involve stopping a noxious substance going into the body. If there are no physical changes that can be measured in brain and/or body when someone stops gambling then I really find it unlikely that GET or CBT changes the brain at all.

The bigger issue is that everything people do changes the brain, so it's a meaningless generic assertion.

Learning changes the brain. Learning good things. Learning false things, and falling to a conspiracy fantasy cult. Taking up a new hobby. Ceasing all social life. Ending a relationship. Falling in love. The birth of a child. The death of a spouse. Every single thing does.

That's why we end up with the mess of confusing headlines putting out mutually exclusive and competing versions of reality:

• Research shows that playing strategy video games is good as it rewires the brain
• Research shows that gambling is bad as it rewires the brain
• Research shows what sitting does to the brain: it rewires it, and it's bad
• Research shows how exercise beneficially rewires the brain

It's just a complete mess. Anyone can gain as much meaning from watching clouds move and deciding what it means for whatever.

 

[rvallee]

I'm wondering what you mean by this - is this certain synapses firing that shouldn't in which case would some additional signal be noticable on a fMRI scan? Would something show for example if you compare fMRI scans with/without PEM as the symptoms would change.

Or would there be other ways of testing this hypothesis (or refining it into a more testable statement)

It's very notable that there exists exactly as much evidence for this as there does for the existence of a soul, something that is widely believed, including by many MDs.

It could be, although it's not very likely, but most importantly it has zero evidence, has merely been asserted out of a single, and foolish, reasoning: well, do you have a better explanation? Which is explicitly antiscientific.

 

[rvallee]

There have been a number of small experiments but I would say there hasn't been that much research and very little at a scale likely to find problems (very little funding). Small experiments have pointed to potential issues.

We've had multiple diseases where nothing has been found until new techniques come along or new ways of thinking. Personally I think blood samples at random times over random individuals is unlikely to find something as it doesn't take account of the dynamic nature of ME. I suspect we need research looking at how things change within one individual under different exertion conditions (i.e. understanding PEM) and there is interesting work in this area now which I seem to remember has some interesting potential insights.

Also, extending this, aside from a few bits of evidence for the cause of MS being the destruction of myelin sheets causing misfires in neuronal signals, there is very little other evidence for it that explains most of the symptoms. Nothing in the blood that explains the fatigue or the brain fog or most of the other symptoms. Nothing on any other type of scans or tissue sample that wouldn't include bits from a brain region undergoing an attack and could differentiate healthy myelin from diseased samples, which is a terrible idea and has never been done.

Same for almost every other disease as well. Any disease that has a unique pathology test only works as validation for the presence of the disease, but almost never anything that actually accounts for the symptoms on standard, or even advanced, tests. So it was always a false argument, and biomarkers actually serve more as a belief validation tool in most cases. They signal to the clinician that they can believe in the subjective symptoms reports more than anything.

 

[Friendswithme]

Hi everyone,

I don't have much time today so I'm not replying to everything I'm afraid. I wanted to still come back and answer a few things.

And please provide a robust definition of overactive, in this context.

Here are a few papers that go into detail regarding the brain being oversensitive or overactive in generating pain (brain retraining for fatigue/PEM/ post-viral illnesses is currently borrowing hugely from pain science under the assumption that they are similar adaptive responses and yes, we need more research)
Turning on the alarm: The neural mechanisms of the transition from innocuous to painful sensation

Redirecting

Neuroplasticity of Sensorimotor Control in Low Back Pain

https://www.jospt.org/doi/pdf/10.2519/jospt.2019.8489

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

Why rejection hurts: a common neural alarm system for physical and social pain
Eisenberger, Naomi I. et al.
Trends in Cognitive Sciences, Volume 8, Issue 7, 294 - 300

This is also good ^ as one piece of work looking at how 'social pain'/emotions overlaps with physical pain in terms of underlying neural circuitry. I believe there is so much more you can read on this overlap if you search. Again, we're talking pain but I think very strongly this is why such large numbers of people are recovering from M.E using brain retraining (yes, there are huge numbers). We are seeing the brain generate PEM and fatigue as an oversensitive/faulty brain alarm system that can be switched off.

Do you think you can retrain someone's brain to never feel sick during a severe flu?

I don't know. I'd say yes in that some people are determined to get control over their body so might be able to train themselves to get to this point, but generally no. Those symptoms help us survive (Lyman's Immune Mind explains this). They make us rest so our physical resources can help us heal, they keep us away from others so we are less likely to spread the flu, they keep us lying down so we aren't up further injuring ourselves when we're already vulnerable, they provoke important caring behaviour from others to give us a higher chance of survival. They are mostly needed for us to be ok, bearing in mind for most of our history we didn't have antibiotics, vaccines even basic medical care. I still get ill and feel bad at times, just like when I sprained my ankle this year it still hurt.

 

[jnmaciuch]

Lyman’s Immune Mind is a fully speculative work that massively misinterprets and overstates basically all of the neuroscience evidence it introduces in favor of a narrative that does not hold up upon closer inspection. I’ll leave my response at that, since I don’t think it’s useful to continually go back and forth about the same pieces of information that others on the forum have already explained do not prove what brain retraining advocates claim that they do.

But I do feel an obligation to restate the insufficiency of the evidence because I have personally witnessed many people get sucked into various brain retraining paradigms because of oft-repeated references to “the neuroscience” that keep being brought up over and over again no matter how many times they get disproven. And waste years of their life on those paradigms, many times ending up sicker than when they started.

 

[Hutan]

Friendswithme, the papers you mention relate to pain, which is different to ME/CFS. Even that literature is riddled with problems. You mention back pain, but reviews, I think even one by people associated with Cochrane, found that the evidence for cognitive behavioural type interventions was very poor, with a large proportion of the studies so bad that they should not be included in reviews. That was even without considering the poor trial methodology of subjective outcomes in unblinded studies. If you can't fix back pain with variations of brain retraining, then suggesting to people that those therapies do fix the pain can only harm, to a greater or lesser degree. If you search the forum on 'back pain', you will find the study.

I don't know. I'd say yes in that some people are determined to get control over their body so might be able to train themselves to get to this point, but generally no. Those symptoms help us survive (Lyman's Immune Mind explains this). They make us rest so our physical resources can help us heal, they keep us away from others so we are less likely to spread the flu, they keep us lying down so we aren't up further injuring ourselves when we're already vulnerable, they provoke important caring behaviour from others to give us a higher chance of survival. They are mostly needed for us to be ok, bearing in mind for most of our history we didn't have antibiotics, vaccines even basic medical care. I still get ill and feel bad at times, just like when I sprained my ankle this year it still hurt.

It seems that you accept that you feel unwell when you have the flu and felt pain when you sprained your ankle, and that these signals are useful and probably impossible to 'cure' until the body has healed. I think we'd both agree that not getting overly worried about feeling ill or being in pain and, to the extent possible, distracting oneself from feeling miserable is generally a good idea and can make the time pass more pleasantly. (Unless of course you actually need to get to the hospital because you are becoming dangerously unwell with your flu or complications of your ankle injury...)

So, the nub of your argument seems to be that, unlike you and your flu, you know for sure that there is no non-psychological reason for me to feel ill. And that is where medical hubris comes in to play. Human bodies are enormously complex, we don't know everything there is to know yet, not by a long shot. If you read some of the studies here, you will realise that there is so much to find out.

Why do you think the brain retraining proponents so completely reject the possibility that the cause of my illness will be found in biochemistry and has nothing to do with feeling unsafe?