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

[Trish]

Well, I guess there are always ways to critique studies. But let's try a thought experiment. Let's say someone has been told by their doctor that their connective tissue is falling apart because they have hEDS, or that they took Myhill's debunked mito test, so they think their mitochondria are broken. Because of this they think they can't exercise, so they don't try. Then, they realise that maybe the test doesn't mean what they think, so they experiment with exercise, or getting out of bed, and they discover they are able to gradually recover.

This isn't just a story, this happens all the time. 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'm sure you could design an experiment to test this in more detail. However, is that likely to happen in the current atmosphere? I doubt it.

I wonder how often that really happens. I would say without exception all the people I've come across with ME/CFS either in person or online, and who have described their experiences in some detail have suffered the opposite problem of not being wary enough of activity or being prevented by circumstances from avoiding activity, and who therefore find out pretty quickly that they still have limits on their capacity for activity that means they trigger PEM.

Yes, there may be a few so afraid of exertion that they stay in bed or rest a lot more than necessary for a while, but the problem is the assumption that seems to follow from this in the BPS world that fear of exertion is the cause of ongoing ME/CFS for everyone.

There is no evidence to support this assumption, and there are thousands of us who have pushed ourselves up to and over our limits without fear, and suffered frequent PEM as a consequence. For example, I continued working part time for years with repeated PEM. I was never afraid of activity, I wanted to continue working until retirement age, but I needed too much sick leave and was forced to take early retirement.

I just can't identify with the stuff about fear avoidance. I find it insulting that anyone would assume that it causes or perpetuates my ME/CFS.

 

[Yann04]

I just can't identify with the stuff about fear avoidance

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.

 

[Theresa]

Well, I guess there are always ways to critique studies. But let's try a thought experiment. Let's say someone has been told by their doctor that their connective tissue is falling apart because they have hEDS, or that they took Myhill's debunked mito test, so they think their mitochondria are broken. Because of this they think they can't exercise, so they don't try. Then, they realise that maybe the test doesn't mean what they think, so they experiment with exercise, or getting out of bed, and they discover they are able to gradually recover.

This isn't just a story, this happens all the time. 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'm sure you could design an experiment to test this in more detail. However, is that likely to happen in the current atmosphere? I doubt it.

Exercise (within reason) is recommended for mitochondrial disease and hEDS and doctors advise it, it's people with ME exercise is really unsafe for.

 

[Utsikt]

There are a number of studies that show that life stress is a precipitating factor, e.g.:

https://journals.lww.com/bsam/abstr..._life_events,_infections,_and_symptoms.9.aspx

Precipitating factors means casual factors.
This study could not prove causation based on its design. Frankly, this is very, very basic stuff that you ought to get right.

According to the retrospective self-reports

https://www.sciencedirect.com/science/article/abs/pii/S0022395696000507

Again, not suited to prove causation:

We investigated precipitating factors in 134 CFS patients through the use of a questionnaire, interview, clinical examination and serology for infecting agents

https://pubmed.ncbi.nlm.nih.gov/24959566/
And again: no causality:

Despite the temporal relationship, it is not yet established whether the endocrine dysregulation is causal, consequent, or an epiphenomenon of the disorder.

I think this serves as a nice demonstration for why it’s often so easy to dismiss BPS-oriented studies.

 

[rvallee]

I think it depends on what you mean by "confirmed". There are many studies that have shown that stress is a precipitating factor, and that fear avoidance is correlated with improvement in CBT trials.

That would be scientifically confirmed. It's the theme of this forum, after all. Lots of people have labeled pacing as fear avoidance. Which is nonsense, and saying it doesn't make it true. Obviously we want to avoid worsening our functioning, this is perfectly rational. In fact many studies have found the opposite, but they get conveniently ignored.

I see that you yourself posted a comment saying that you had a very stressful life pre-illness, but you don't believe that it caused your illness (at least, that is my recollection of your comment, but feel free to correct me if I've got it wrong). Many patients themselves acknowledge that they were "overly afraid". This doesn't mean the illness is caused by fear avoidance, just that it's a factor for some patients.

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.

 

[rvallee]

I don’t think that anyone has seriously suggested that we shouldn’t trust that the patients believe that X helped them.

The question is if that alone is sufficient evidence for the efficacy of a treatment. More often than not, it isn’t.

Especially considering how the first year or so of Long Covid, the exact same thing happened with supplements. People were sharing the supplements stacks that helped them recover, or improve. Then over time people obviously noticed that it just doesn't work like that, that those remissions, recoveries and improvements were not related to any of this, especially that lots of people saw their health worsen not long after, despite still taking the supplements that 'healed' them.

This is all very common false attribution error. This is the same phenomenon that sees people wear things like 'balance bracelets' and other superstitious stuff.

So the community mostly stopped doing that. They let go of treatments that don't work, something the medical profession has proven itself incapable of, because they are not involved in any real stakes, for them life goes on regardless. Which is incredibly embarrassing.

 

[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?