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

[shak8]

Teaching your brain something....hmm. I've never had luck with that project. It's more the other way around.

Sounds like brain retraining is indicated for those with a psychiatric diagnosis, or nearly one per @Friendswithme. That is what you indicated in your reply to my post.

In that case, it's a matter of educating and reassuring the highly distressed patient that their pain signals are aberrant, that they are not in danger.

This is akin to the concept of anti-pain catastrophization in that it is rolled out and extolled as virtuous for those patients who vocalize repeatedly how awful their pain is and how they can't cope with it, at all.

So a roll out of a trademarked "program" to guide the pain patient who is vocal about their intense suffering along the path to minimizing their assessment of pain's insistence, it was a veritable catastrophe (at least in my case).

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.

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

Fine. Just asking for honesty here. You aren't really doing effecting a lasting positive change in symptoms. Brain retraining and pain anti-catastophizing are simply patient education and reassurance, and training in how to comport oneself around healthcare personnel (don't irritate them with strident whining).

You can reference the amygdalla etc. but that doesn't change the story: it's magical thinking placebo response invoked and anectodotally.

(edited at least twice)

 

[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?