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

[rvallee]

But surely nothing but studies set up to confirm what is expected?
Having studies that have looked at something doesn't mean they provide any reliable information.

For example, many studies have looked into the healing power of prayer. It doesn't work, but studies have explored this. The main difference is that null results are accepted here because of how the beliefs and biases are aligned.

The NIH will soon be conducting studies to prove that autism is caused by vaccines. Large studies. Studying something doesn't make it real, in fact the whole point is precisely to know whether it is with certainty, and not a single claim in mind-body stuff even reaches the lowest level of reliability, has zero predictive power to the point of being as good as random.

 

[Jonathan Edwards]

This isn't just a story, this happens all the time.

It probably does, to a few very gullible people. But the question is whether or not we have reason to think this applies widely to people with ME/CFS. It obviously does not apply to many because it took them five years to even get diagnosed and hear about Sarah Myhill or EDS.

If there are people like this then no doubt they will discover they are better sooner or later. And as you say, it seems they do. Why is it of interest to those for whom the narrative is an irrelevance?

 

[Jonathan Edwards]

I'm sure you could design an experiment to test this in more detail.

An experiment of this sort was designed. It was called the PACE trial. The idea was that if you persuaded people either with CBT or just doing GET, that they would get better if they changed their viewpoint and did more exercise they would do more exercise and get better.

The result was that there was a smidgin of a suggestion that people change how they thought - they at least reported feeling a bit less fatigued. But the more objective tests of being better showed no improvement. Which seems to show that when studied in a controlled experiment rather than by anecdote changing views makes no difference to how well people actually are.

 

[dundrum]

An experiment of this sort was designed. It was called the PACE trial. The idea was that if you persuaded people either with CBT or just doing GET, that they would get better if they changed their viewpoint and did more exercise they would do more exercise and get better.

The result was that there was a smidgin of a suggestion that people change how they thought - they at least reported feeling a bit less fatigued. But the more objective tests of being better showed no improvement. Which seems to show that when studied in a controlled experiment rather than by anecdote changing views makes no difference to how well people actually are.

The problem is there are no objective measures. We only have subjective ones (fatigue, etc). That's the reality.

 

[Utsikt]

The problem is there are no objective measures. We only have subjective ones (fatigue, etc). That's the reality.

PACE had an objective measure: a walking test.

 

[dundrum]

It probably does, to a few very gullible people. But the question is whether or not we have reason to think this applies widely to people with ME/CFS. It obviously does not apply to many because it took them five years to even get diagnosed and hear about Sarah Myhill or EDS.

If there are people like this then no doubt they will discover they are better sooner or later. And as you say, it seems they do. Why is it of interest to those for whom the narrative is an irrelevance?

No actually, it's not just "a few very gullible people". There are a large number of patients who get stuck in this rabbit hole. I've been suckered into believing quack tests myself until I did some due diligence.

Why is it of interest to those for whom the narrative is an irrelevance?

Because it's a very major pillar of this illness. It affects a lot of patients, and was the reason behind the PACE trial.

 

[dundrum]

PACE had an objective measure: a walking test.

Yes, that is exactly my point. A walking test is objective, but is not an objective measure of ME/CFS. Mild patients aren't likely to have much if any difference in walking after recovering.

 

[dundrum]

I did not. I actually had an awesome life that was about as free of stress as is possible. I was very blessed. I don't even have any fears, and not a single event in my life that would rate above a 1 on a trauma scale. I basically rate none on almost all the usual factors that go into the mix to support the ideology, so this is all especially absurd to me, as even with chance it shouldn't be possible.

Sorry if I misremembered your comment, and I can't find it now. Stress is not simply about trauma, it's about combined load. Exercise, infections, work, lack of sleep, etc. all add to that load.

 

[Evergreen]

There are many studies that have shown...that fear avoidance is correlated with improvement in CBT trials.

That correlation relies on these three questions in the CBRQ-18:

FA1: I am afraid that I will make my symptoms worse if I exercise
FA2 (R): My symptoms would be relieved if I were to exercise
FA12: Physical activity makes my symptoms worse

The problem is that those questions will be answered similarly by these two groups:
A. people whose symptoms are made worse by physical activity/exercise, and
B. those whose symptoms are not, in fact, made worse by physical activity/exercise

Only group B. could be accused of "fear avoidance". So that whole correlation may simply reflect the fact that people who are improving improve.

These patients did have ME/CFS and met the criteria, but then they got misinformed, they perhaps naturally recovered but didn't realise it until they experimented. The excessive fear (which is understandable for a strange illness which tends to punish over-exertion) prevented their recovery.

I think the scenario you describe would predict that damage beliefs would correlate with physical function, i.e. people who have them would restrict their physical activity and score low on physical function questionnaires like the SF36 PF. But they don't correlate at all with SF36 physical function scores in adolescents with "CFS" (p=0.783 in this study https://pmc.ncbi.nlm.nih.gov/articles/PMC7100009/). So the scenario you describe may not be nearly as common as you think.

 

[Yann04]

Yeah I don’t get it. I currently live in dark room and can’t even speak. But if say tomorrow I was magically cured and I was never told. I’m pretty sure I’d be back to normal exertion levels in a week and a half. If I never get those signals that tell me to stop, then I wont stop anymore.

Every single instinct I have is telling me to go outside and be free and do things, I’m desperate to be able to do more. If my body stops preventing me from following those instincts, I won’t stay in tortuous boredom in a darkened room out of habit! Hell no, I’d be rushing to get my life back and get back the time I’d lost.

I kind of feel the fear avoidance is backwards logic. People usually aren’t improving because they do more, they are doing more because they are improving. Cart before the horse type logic, correlation causation mixup.

 

[bobbler]

Discussion of whether researchers do or don't come to this forum and why is off-topic for this thread; further posting on this will be deleted. Comments on how science is discussed on the forum can be made on
How do we discuss science and medicine on S4ME forums?

It would be useful to read that thread before posting on it to avoid repetition.

That correlation relies on these three questions in the CBRQ-18:


The problem is that those questions will be answered similarly by these two groups:
A. people whose symptoms are made worse by physical activity/exercise, and
B. those whose symptoms are not, in fact, made worse by physical activity/exercise

Only group B. could be accused of "fear avoidance". So that whole correlation may simply reflect the fact that people who are improving improve.


I think the scenario you describe would predict that damage beliefs would correlate with physical function, i.e. people who have them would restrict their physical activity and score low on physical function questionnaires like the SF36 PF. But they don't correlate at all with SF36 physical function scores in adolescents with "CFS" (p=0.783 in this study https://pmc.ncbi.nlm.nih.gov/articles/PMC7100009/). So the scenario you describe may not be nearly as common as you think.

that same issue of bps and backe being allowed to treat ‘anything but me/cfs’ in such a way that they harm pwme just in case they don’t have it. Or in other words the approach of at best (if it were accidental and not design) collateral damage approach where their beliefs’whaf about those who don’t have the illness’ were the ones worth saving over harming those who the clinic was actually for meant they set up clinics that harmed those who had the illness.

this presumption being pushed based on no evidence by @dundrum is the same silencing by sticking not just false lies onto people’s history and existence, but opposite of the situation constructed for pwme and totally opposite to their identity often and truth is the exact same thing. And it’s cruel callous and obviously harmful. There is no good intention whatever fake claims made to cover no thought at best.

if people don’t want to put the effort in to distinguish me/cfs then shut up on slinging false slander, but instead pretend they can’t tell the difference with some (if it’s ever true) fear of exercise then they shouldn’t be studying them or certainly not getting jobs were they have responsibility over them. It’s just bigotry. Unprofessional, unsafe and frankly harmful inaccurate propaganda vs a disability from even an layperson (because it’s often said about people who did more those prior years than the person saying it so they don’t even check it’s true). And bad method - they can’t do long term vs short term outcomes or know what to measure sensibly. Or do but well then you’ve wilful ignorance

 

[Friendswithme]

CBT is very much the same idea

CBT and brain retraining have some key differences. In fact, brain retraining incorporates some CBT in it but there is lots to it beyond that. I did an NHS CBT course when I was ill. It made zero difference to me, I felt like I learnt nothing useful in it. It was only when I learnt about brain retraining that I was able to recover.

I have been assesed by 5 different psychologists throughout the years. They all concluded I have no psychological issues whatsoever, no fear, no phobias, no problems.

You know, I would say the same when I was ill. I'd had that professional input and assessment and was being told I had no 'psychological issues.' The problem is the vast majority of psychologists do not understand brain retraining. Some are starting to, including Jake Hollis who was ill when he was training to be a psychologist (so you'd think he'd have known if there was something he needed to work on related to his mental health) but he only started recovering when he learnt the theory behind brain retraining.

Same. My coping mechanism was to push through. When I first got ME my first reflex was to exercise more — push my limits. Try to break my cycling and cross country skiing records. Needless to say, I crashed and crashed and now I’m stuck in bed. For the first couple months after the trigger I was putting in 15 hours intense exercise per week, and now I’m unable to sit up. So fear avoidance is like the opposite of my experience.

Same here. I tried pushing through a lot in the first year because I loved exercise and thought it would help. It didn't fix me, it was making me worse. I would have said the same about fear avoidance not being part of my illness. Except I was wrong because I simply didn't understand how fear worked with my symptoms and how they can involve an underlying fear that I wasn't consciously aware I was experiencing. This is where I'm trying to push people into taking another look at things, by reading Lekander's book. I was browsing it today. It is so good and such an accessible read. I'm really frustrated people here are refusing to read it. I think you'd learn something.

 

[Jonathan Edwards]

No actually, it's not just "a few very gullible people". There are a large number of patients who get stuck in this rabbit hole. I've been suckered into believing quack tests myself until I did some due diligence.

Lots of people accept stories from people like Myhill but what is the evidence that this actually affects the course of their illness? It is hardly surprising that people cling to theories when the establishment denies the existence of their illness.

I am not denying that there might be an impact ofd the course of the illness. I am simply saying that psychological theory provides no reliable predictions that can be tested in this area and what trials we have suggest that treatment based on such theories probably has no useful effect.

Because it's a very major pillar of this illness. It affects a lot of patients, and was the reason behind the PACE trial.

But the PACE trial set out to test a hypothesis and the hypothesis turned out not to predict the outcome. And it was years ago now. Nobody has followed it up with more detailed work, which they would have done if they really thought (deep down) the treatments worked. The lack of any further trials of note presumably reflects a realisation (even if repressed) that it would be lucky to even get the smidgin of difference seen in PACE, presumably from expectation bias.

How do we know this is a 'pillar of the illness' whatever that is supposed to mean. It seems to presume that it applies to all cases. As I mentioned earlier it cannot, since many people remain ill for months or years without getting anywhere near a diagnosis or Myhill's theories. A lot of them try CBT, rehab brain training or whatever and remain just as ill as they were.

 

[Utsikt]

Yes, that is exactly my point. A walking test is objective, but is not an objective measure of ME/CFS.

I don’t think anyone said it was an objective measure of ME/CFS. But it was the objective measure of choice for the authors, who presumably should be the experts on which measures that would respond best to their treatments?

The fact is that they formulated a hypothesis that was disproven by their own study.

Mild patients aren't likely to have much if any difference in walking after recovering.

What do you base that assumption on?

Do you have examples where patients that are at least 50 % physically impaired with an illness that do not show any clinically significant improvements in e.g. 6MWT or ISWT when their illness improves or resolves?

 

[Friendswithme]

You can't say any specific thing that is done because "it is a process you need to follow over time and its best to build your understanding up in layers"? In other words, am I understanding right that you don't want it known what someone actually does in brain retraining before a person is ready because you think it'd have more benefit to learn it the right way?

It is really strange to me that someone has to take a six week course to even know what the treatment is.

Can you say anything specific at all? Like is it focusing on your breath? Telling yourself "exercise won't hurt me" while you exercise? Yelling "stop" at a piece of paper? "Brain retraining" means next to nothing to me.

If you reread my post, you'll hopefully see me say you can get your head around the basics in a few days. It's just that that's the basics and also some people do this, dismiss it and miss out on the chance of ever deepening their knowledge to give it the best chance of working. For some people, they do the work over 1-2 years and find they are still learning, partly because they are learning about their own past and what might have caused their brain to be scared, partly because you can keep building on your knowledge. This work is a collaborative and experiential process and you do need to do the work and monitor how your understanding feels and changes over time.

Repetition is key to see what is truly working for you. As an example, one tool is somatic tracking. You can look it up on YouTube to see in action. It would be really easy to read about it, decide it's not for you and leave it at that (and fair enough if you want to do that). But it is only by trying it out a few times a week over a period of weeks, taking time to reflect on your insights, maybe tweaking how you do it by talking with other recovered people who have done the same and learning other bits of info about the theory behind it all that you will get the full experience. 4-8 weeks of work is actually nothing when you are in the middle of it and seeing improvements as the weeks go by, what you tend to see is people find it so helpful that they hungry to immerse themselves in it and learn as much as they can. 4-8 weeks is definitely nothing when you have lost years to being ill and this starts to change that.

Can I say anything about the process? The first part of the process is simply learning how neuroscience has managed to understand how the brain can respond to fear. It is like being given a handbook on what your own brain is doing and you start to go 'oh, I see how this works here, here and here in my own life.' I am such a fan of Lekander's book as he breaks this down so well, giving many people the ability to understand how he is describing it. Not all authors have that knack. Not every book is readable. Can I summarise his book here? I don't feel very skilled at attempting that and it is stuffed with so much interesting stuff that I'd be missing too many key things in it. I'm not an immunologist or a neuroscientist (I wish I was!)

With the above theoretical knowledge, you are then encouraged to do things that will calm your nervous system down. So that might be meditation, it might be journalling (there is so much evidence about journalling helping the brain process emotion including fear, even if we don't understand how that works yet), it might be getting regular time in nature or adding in very small things on a daily basis that make you feel joy. Now believe me, I had tried journalling and meditation whilst ill and they didn't get me better and I hear that a lot from others but this is where the routine of trying these things is important as well as understanding the neuroscience mentioned above to help you understand the role they are playing in calming your nervous system. For some reason, framing it in this theory makes all the difference.

Somatic tracking is then arguably key. This gets you to focus on a particular symptom with a watchful curiousity (that comes from mindfulness) while trying to reeducate your brain to feel safe. It's the weirdest, coolest exercise because you can watch demonstrations of it and symptoms disappear or start to jump around the body in real time. Someone can start with neck pain or ringing in their ears and then move to getting knee pain then nausea and then they all vanish. It's kind of like watching a religious healing except we can explain *why* the brain does this (see Lekander's book again which breaks it down, sorry!). I now know multiple people who had severe M.E who have tried somatic tracking repeatedly over months and recover. Some of them are detailed testimonials in FB groups, some are people I knew for years when they were ill so I know how incredibly unwell and restricted they are. I've watched them go from not believing it will work to trying it, thinking it's not going to help them and then it starts to and then they make huge strides forward. And the symptoms keep coming back and they go over and over these steps and the symptoms go away again. It's so weird to watch but there's no denying it's real when you see it play out.

I hope this helps a bit. No need to force yourself into exercise or to say 'stop' at your symptoms or anything.

 

[Friendswithme]

If you think brain training in the format of Alan Gordon, Howard schubiner has any serious science to it then point me to the studies. They are acting like cult leaders that do great harm at present.

Are you aware they have helped literally thousands of people to recover? I simply wouldn't have recovered if it wasn't for them. That doesn't mean I think they are perfect humans but I have seen so many testimonials from people they have helped and the PRT/EAET training means they will reach many thousands more over the course of their lifetimes. The simple fact is these two men are responsible for huge numbers of people with multiple chronic symptoms recover to the point of having really good health again. There are very few people who have had the positive impact they've had between them. And I've actually met Schubiner in person. He was the most gentle, compassionate man who talked to me about my past with lots of kindness and sensitivity (unlike many of the horrible doctors I met when I was ill). I was very impressed by him and I really don't like male doctors in general.

 

[Utsikt]

Are you aware they have helped literally thousands of people to recover? I simply wouldn't have recovered if it wasn't for them. That doesn't mean I think they are perfect humans but I have seen so many testimonials from people they have helped and the PRT/EAET training means they will reach many thousands more over the course of their lifetimes. The simple fact is these two men are responsible for huge numbers of people with multiple chronic symptoms recover to the point of having really good health again. There are very few people who have had the positive impact they've had between them. And I've actually met Schubiner in person. He was the most gentle, compassionate man who talked to me about my past with lots of kindness and sensitivity (unlike many of the horrible doctors I met when I was ill). I was very impressed by him and I really don't like male doctors in general.

You were asked about studies, but you started talking about how much you like the guy. That’s what you would call a deflection.

So let me try to ask again: can you provide any studies that that support the scientific merit of their brain training approaches?

 

[Friendswithme]

You were asked about studies, but you started talking about how much you like the guy. That’s what you would call a deflection.

So let me try to ask again: can you provide any studies that that support the scientific merit of their brain training approaches?

I am repeating myself but not currently. No. And that is a problem, but I don't personally believe a brain retraining study would be allowed to go ahead on M.E. as things stand. I said that in an earlier post and someone responded saying they would be ok with that, which is great. But I don't think most people would be ok with thousands to millions being spent on it instead of biomedical research. There would be uproar. The MEA would speak out against it. Patients would say they feel it would do them harm because it's just like CBT and GET (it isn't). There would be huge pressure on the research team to stop.

I would like to think in 20 years we will have a large number of studies scrutinising it properly. Until then, what we have is a very comprehensive break down of the theory behind why Schubiner and Gordon's ideas are likely helping people (Lekander's book) and thousands of testimonials from patients documenting how and why it helped them and the objective changes they've seen in their recovery. For me, I was unable to work at all and I now work full time (I had to build up to that by volunteering and then working part time), I couldn't walk far and now I can hike, including in hilly areas. I couldn't cycle at all and now I can, etc etc. I couldn't get out the house more than once or twice a week (and sometimes not at all) and I struggled to talk for long, now I have no limitations on those things. I struggled to concentrate on reading/watching films and again now I have no limitations.

 

[Kitty]

These patients did have ME/CFS and met the criteria, but then they got misinformed, they perhaps naturally recovered but didn't realise it until they experimented. The excessive fear (which is understandable for a strange illness which tends to punish over-exertion) prevented their recovery.

As somebody who has recovered, twice, that sounds like naive nonsense.

You can't mistake the recovery process. A body that was ill and in pain stops being ill and in pain. Overlooking it would be like overlooking a bucket of water being thrown over you.

It's like recovering from a virus. You wake up feeling better. Lying in bed for weeks wouldn't alter the fact of the recovery, because whatever you did, all the symptoms of illness would have gone.

It's comical to suggest that people are somehow in control of this process. People can't stop themselves recovering.

The huge irony is that psychobehavioural interventions could potentially have a role for some people with ME/CFS. But this opportunity has been staring psychobehaviouralists in the face for thirty bloody years, and yet not ONE of them appears to have seen it. I can think of explanations, but none of them are flattering. Groupthink, incompetence, wilful ignorance.

This big flashing red beacon, the one that's somehow entirely invisible, has lit up internet forums since the early 1990s, and probably did the same in patient support organisations prior to that. It is this: everybody with ME/CFS—everybody—has reported they make themselves much more ill by overexerting. And some of them find pacing incredibly challenging. If psychobehaviouralists can't support people to adjust behaviours that always result in harm, what in God's name is the point of them?

 

[Friendswithme]

Same. My coping mechanism was to push through. When I first got ME my first reflex was to exercise more — push my limits. Try to break my cycling and cross country skiing records.

In the world of brain retraining, this makes sense though.

You had some symptoms. The brain gets the message it isn't safe (because symptoms normally mean the body is ill, aka there is a threat and you actually need to rest). You pushed through them. The brain is then actually getting another message it isn't safe (because if you are ill, intense exercise can be dangerous. Plus you aren't listening to your body so there is another layer of danger). So it generates even more symptoms to try to get you to look after yourself.

You are taking 'fear' literally, as in you're saying you weren't scared of exercise. This is not how the brain retraining world looks at it. You have to visualise it almost as if there is a primitive brain, stuck in a skull in the dark. It relies on messages it gets through your senses and acts accordingly to protect you, even if there is a more sophisticated part of you that has no fear of exercise and wants to be out skiing. The primitive brain wins out in this case by ramping up the symptoms. And then there is more fear and more symptoms.

You have to dig deeper and look at 'fear' in a different way. Was there any other stress in your life that might have made this protective mechanism be oversensitive at this point in your life? This doesn't have to be any big trauma, it seems to happen when there is minor work stress or just you get a virus, in some cases. Could anything small have tipped your brain into being overprotective, even if you didn't want that to happen?