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

[dundrum]

How do you know that fear of exercise can prevent natural recovery?

Fear of exercise might prevent someone doing fitness exercises and getting physically fitter, but lots of people are very unfit and don't have ME/CFS, so being unfit isn't the cause of ME/CFS, so why would not exercising prevent someone recovering from ME/CFS?

It's more about fear of PEM. Many patients avoid activity (and therefore PEM). To be diagnosed with ME/CFS you have to have PEM, so if you never experiment, how do you know if you still have PEM when doing a specific activity?

 

[Yann04]

It's more about fear of PEM. Many patients avoid activity (and therefore PEM). To be diagnosed with ME/CFS you have to have PEM, so if you never experiment, how do you know if you still have PEM when doing a specific activity?

The simple fact no one with ME/CFS is anle to completely avoid PEM except mild patients and that’s probably rare.

Most of us continually trigger it trying to scrape by and survive. Continually push ourselves with the magic hope this time we don’t have to pay for it. Very little people are privileged enough to be able to completely cut out all exertion causing PEM.

So if we notice that exertion is not causing PEM anymore, well we’ll naturally do more of it.

We’re human after all. No human is going to deprive themselves of their most basic instincts and desires unless they are absolutely forced too.

 

[dundrum]

So your argument is that someone who avoids exercise won’t be aware of a natural recovery. Not that the natural recovery won’t happen?

That’s an important distinction with very big implications for your claims about treatment.

Not exercise specifically, but activity in general. And I think there are a couple of different points to be made. First, yes, they won't be aware of natural recovery. But second, there may be factors relating to activity that help recovery. Staying in bed, for example, causes OI, pain, autonomic changes, etc. Symptoms change over time, so activity after a week of bed rest may not result in the same PEM as it would during an initial crash. It's understandable that patients get stuck, as there isn't really a lot of good advice.

 

[bobbler]

Let me be crystal clear: I am definitely not saying that all patients have a fear of activity. Of course they don't, and that would be a ridiculous thing to say. It's clearly not true, and your experience (and many others) are great examples of that. However it's also undeniable that many patients do develop a fear of activity, and that fear can prevent natural recovery. It's a mistake to lump all patients together as all having fear avoidance, which is what the PACE trial did. But still, it is a major issue for some patients. Clearly it's not central to ME/CFS, but it is a factor that can inhibit natural recovery.

There it is again ! This time ‘many patients’ as your scientific, considered thought in the very comment you post straight after you cherry-picked @Utsikt s reply instead of understanding it’s simple and important point?

And you fronted it with ‘let me crystal clear;’ in order to try and just use assertive language to pretend what you were about to say would be clear and therefore I’d assume have evidence or sources listed for any claims.
And phrases like ‘undeniable’ asserted about apparently lots of people but again with no evidence

do you realise what you are doing? Ie are these replies serious and you earnestly think there is content behind what you are saying and you aren’t realising it is missing?

Let me be crystal clear: I am definitely not saying that all patients have a fear of activity. Of course they don't, and that would be a ridiculous thing to say. It's clearly not true, and your experience (and many others) are great examples of that. However it's also undeniable that many patients do develop a fear of activity, and that fear can prevent natural recovery. It's a mistake to lump all patients together as all having fear avoidance, which is what the PACE trial did. But still, it is a major issue for some patients. Clearly it's not central to ME/CFS, but it is a factor that can inhibit natural recovery.

 

[dundrum]

The simple fact no one with ME/CFS is anle to completely avoid PEM except mild patients and that’s probably rare.

Most of us continually trigger it trying to scrape by and survive. Continually push ourselves with the magic hope this time we don’t have to pay for it. Very little people are privileged enough to be able to completely cut out all exertion causing PEM.

So if we notice that exertion is not causing PEM anymore, well we’ll naturally do more of it.

We’re human after all. No human is going to deprive themselves of their most basic instincts and desires unless they are absolutely forced too.

That's good, but not all patients manage to do that, and it's also difficult to tell the difference between PEM and other causes of symptoms. And I think "pushing" is part of the problem. If you look at brain retraining, it's never about pushing. It's generally the exact opposite: reducing stress. That's a key part of most of those programmes.

 

[Yann04]

Not exercise specifically, but activity in general. And I think there are a couple of different points to be made. First, yes, they won't be aware of natural recovery. But second, there may be factors relating to activity that help recovery. Staying in bed, for example, causes OI, pain, autonomic changes, etc. Symptoms change over time, so activity after a week of bed rest may not result in the same PEM as it would during an initial crash. It's understandable that patients get stuck, as there isn't really a lot of good advice.

I think this point is moot for the reasons I elaborated with the post right before yours, but surely if it was a solid argument it is falsifiable.

And the falsifiability would be that either people who exercise have major recoveries compared to controls or don’t. And RCT’s like PACE and MAGENTA have failed to show that there is any sort of lasting improvement.

 

[dundrum]

There it is again ! This time ‘many patients’ as your scientific, considered thought in the very comment you post straight after you cherry-picked @Utsikt s reply instead of understanding it’s simple and important point?

And you fronted it with ‘let me crystal clear;’ in order to try and just use assertive language to pretend what you were about to say would be clear and therefore I’d assume have evidence or sources listed for any claims.
And phrases like ‘undeniable’ asserted about apparently lots of people but again with no evidence

do you realise what you are doing? Ie are these replies serious and you earnestly think there is content behind what you are saying and you aren’t realising it is missing?

Did you miss the studies I posted in response to Utsikt?

 

[dundrum]

I think this point is moot for the reasons I elaborated with the post right before yours, but surely if it was a solid argument it is falsifiable.

And the falsifiability would be that either people who exercise have major recoveries compared to controls or don’t. And RCT’s like PACE and MAGENTA have failed to show that there is any sort of lasting improvement.

No, it's not that simple. Of course exercise alone isn't a cure. We know that. The key point is doing activity and exercise when your body is able to, and also removing factors that could be exacerbating symptoms (such as stress). And yes, it's definitely falsifiable by having a good rehabilitation study.

 

[Trish]

The argument is based on simple logic. If a patient avoids all exercise, they have no way of knowing if they are able to do it.

It is actually very difficult to avoid ALL exercise. Turning over in bed is exertion, thinking is cognitive exertion, if someone is starting to recover, they will surely notice those things stop making them crash. So they naturally do a little more. Inevitably in everyone's life there are times when we are forced to use our muscles and brains. Sick people are usually so longing to improve that they will test the boundaries one way or another, or life circumstances will force them to do so.

 

[Utsikt]

As you say, fear of exercise is indeed a valid fear, and is completely understandable. But you must admit that if that fear is taken too far, e.g. never trying to exercise, or never trying to get out of bed), then how does the patient know if it's still a problem?

I still get symptoms from using the bathroom. So I don’t have to check if I still can’t walk to fetch the mail.

If I stop getting occasional PEM from my extremely limited life as 99 % bedridden, I’ll try doing a bit more.

PEM is not some binary thing, it exists on a spectrum. You adjust your behaviour when you notice that there is a shift.

 

[Yann04]

No, it's not that simple. Of course exercise alone isn't a cure. We know that. The key point is doing activity and exercise when your body is able to, and also removing factors that could be exacerbating symptoms (such as stress). And yes, it's definitely falsifiable by having a good rehabilitation study.

Okay. But then there is no evidence behind your point.

It is an opinion. Something unproven.

Like claiming pwME have mitochondrial damage. (a lot of low quality studies claiming something doesn’t make it true).

And personal experience in recovery doesn’t really matter. You can find large swaths of people convinced they recovered by praying to a diety or blood letting or taking a placebo. Humans are notoriously terrible at unpicking correlation from causation. And everything you mention might make someone better, more activity, less stress, is also exactly what ANYONE would experience if their illness got better. So it’s a massive risk of mixing up correlation and causation.

 

[Holinger]

How do you know that fear of exercise can prevent natural recovery?

Fear of exercise might prevent someone doing fitness exercises and getting physically fitter, but lots of people are very unfit and don't have ME/CFS, so being unfit isn't the cause of ME/CFS, so why would not exercising prevent someone recovering from ME/CFS?

That is the key point de-conditioning symptoms have nothing to do with ME/CFS at all. The picture is completely different.

 

[dundrum]

I still get symptoms from using the bathroom. So I don’t have to check if I still can’t walk to fetch the mail.

If I stop getting occasional PEM from my extremely limited life as 99 % bedridden, I’ll try doing a bit more.

PEM is not some binary thing, it exists on a spectrum. You adjust your behaviour when you notice that there is a shift.

Yes, but the point is that some things can potentially help that shift, and that is what these brain retraining programmes aim to do. I'm not saying that they are able to cure everyone, or that they aren't a bit hit and miss in terms of evidence. It's probably worth looking at the actual evidence, and seeing if it applies to your own situation, rather than paying a lot of money for something that might not work.

 

[dundrum]

Okay. But then there is no evidence behind your point.

It is an opinion. Something unproven.

Like claiming pwME have mitochondrial damage. (a lot of low quality studies claiming something doesn’t make it true).

And personal experience in recovery doesn’t really matter. You can find large swaths of people convinced they recovered by praying to a diety or blood letting or taking a placebo. Humans are notoriously terrible at unpicking correlation from causation. And everything you mention might make someone better, more activity, less stress, is also exactly what ANYONE would experience if their illness got better. So it’s a massive risk of mixing up correlation and causation.

No, it's not merely opinion, as we have many studies showing that stress is a preciptating factor, that rehabilitation and stress management helps, as well as patient experiences. You may not agree that the evidence is good enough, but that's what we have, and there are things patients can do that aren't harmful.

 

[Trish]

It's more about fear of PEM. Many patients avoid activity (and therefore PEM). To be diagnosed with ME/CFS you have to have PEM, so if you never experiment, how do you know if you still have PEM when doing a specific activity?

I don't know what you imagine most people with ME/CFS's lives are like. Many, if not most of us, have no option but to push our limits. We know perfectly well that we are not recovered because we repeatedly experience PEM.

Not exercise specifically, but activity in general. And I think there are a couple of different points to be made. First, yes, they won't be aware of natural recovery. But second, there may be factors relating to activity that help recovery. Staying in bed, for example, causes OI, pain, autonomic changes, etc. Symptoms change over time, so activity after a week of bed rest may not result in the same PEM as it would during an initial crash. It's understandable that patients get stuck, as there isn't really a lot of good advice.

That's good, but not all patients manage to do that, and it's also difficult to tell the difference between PEM and other causes of symptoms. And I think "pushing" is part of the problem. If you look at brain retraining, it's never about pushing. It's generally the exact opposite: reducing stress. That's a key part of most of those programmes.

Maybe the clinicians who diagnosed those people or made that hypothesis are mixing up ME/CFS and burnout/stress related problems and there's some misdiagnosis going on. I remember watching a video by Rona Moss-Morris where she described in some detail the experience of one of her patients. It seemed clear to me that the patient had a stress/burnout problem, not ME/CFS.

Or the specific examples from high profile patients (which I can't post here in a public thread, but am happy to post privately)?

Please do not speculate or invite discussion about any identifiable individual's health either on a forum thread or in a private forum conversation. The forum rules apply to private conversations too.

 

[bobbler]

Yes, people with PEM avoid exercise. However PEM varies over time and is not fixed. A certain amount of avoidance is sensible, but too much is detrimental.

I don’t think you understand PEM

I’d be more impressed if you were curious to learn about it and learn what M.E./cfs is

I’m not sure anyone who misunderstands it should be near pwme certainly treating them for /with things that have risk of harm where someone won’t ’get It’ so it’s a bit worrying to watch the grasping at but, but

and it not being a ‘but I thought x,y,,z’ with an open mind that you might have either/both been misinformed or/and just need to be updated on the science and the flaws of these assumptions and papers

but you aren’t coming across that way. And saying ‘but lots of patients’ without defining any source when so many had their health , lives wrecked and the psychological harmfulness of that inaccurate distracting label when the opposite was true is pretty worrying

- and no I’m not getting it wrong in summarising what you are doing, you are if you think you aren’t doing that with your casual non-precise assertions that keep mentioning an illness as if it causes that. But no evidence just more assertive language when you are asked for it

you do know about how to draw implications and conclusions in what you say that are proportional to the results and evidence quality you have don’t you? And how it’s an incumbent responsibility to not extrapolate inaccurately particularly to those to whom it will do harm ?

 

[Yann04]

No, it's not merely opinion, as we have many studies showing that stress is a preciptating factor, that rehabilitation and stress management helps, as well as patient experiences. You may not agree that the evidence is good enough, but that's what we have, and there are things patients can do that aren't harmful.

All those studies are retrospective and with therapist and selection biases.
The only study I know of that actually followed a group of people before they got ME and checked with them after (Jason) actually found there was no link between mental health/stress and develloping ME.

So the only piece of quality evidence disagrees with you.

So yes, it is your opinion. Your opinion being the pet theory of a group of psychiatrists doesn’t make it any less of an opinion until there is good evidence.

And on that point, the only piece of good evidence finds the exact opposite.

 

[Utsikt]

Yes, people with PEM avoid exercise. However PEM varies over time and is not fixed. A certain amount of avoidance is sensible, but too much is detrimental.

I would argue that PEM is worse than deconditioning or avoiding activity.

Consider how patients with diabetes type 1 were treated before the discovery of insulin. Children were literally slowly starved to death because it would have killed them sooner to let them eat more.

Any sane person walking into their hospital ward would immediately think that it would be a good idea to feed the starving children. But hopefully, they would listen to the children, their parents and their doctors when they were told that it would harm them.

We don’t have insulin for PEM. So we have to suffer the consequences of avoiding PEM. Luckily, inactivity won’t kill you. It will just make your life very limited and certain aspects of your health will worsen. But it is better than the alternative.

 

[dundrum]

I don't know what you imagine most people with ME/CFS's lives are like. Many, if not most of us, have no option but to push our limits. We know perfectly well that we are not recovered because we repeatedly experience PEM.

Yes, I am familiar, and I'm not saying it is easy.

Maybe the clinicians who diagnosed those people or made that hypothesis are mixing up ME/CFS and burnout/stress related problems and there's some misdiagnosis going on. I remember watching a video by Rona Moss-Morris where she described in some detail the experience of one of her patients. It seemed clear to me that the patient had a stress/burnout problem, not ME/CFS.

No, that doesn't seem to be the case from what I can see. There are many who definitely do fit the criteria and are severe.

Please do not speculate or invite discussion about any identifiable individual's health either on a forum thread or in a private forum conversation. The forum rules apply to private conversations too.

Ok thank you. Yes, I agree with this. It does make it difficult if we're not able to give specific examples, but I agree that it will just be problematic.[/quote]

 

[dundrum]

All those studies are retrospective and with therapist and selection biases.
The only study I know of that actually followed a group of people before they got ME and checked with them after (Jason) actually found there was no link between mental health/stress and develloping ME.

So the only piece of quality evidence disagrees with you.

So yes, it is your opinion. Your opinion being the pet theory of a group of psychiatrists doesn’t make it any less of an opinion until there is good evidence.

And on that point, the only piece of good evidence finds the exact opposite.

I think you should check that study. From what I remember it did actually find much higher levels of anxiety depression and stress in the ME group prior to infection (3x IIRC). They did a large number of comparisons, and it was non significant after correction. It would be interesting to see a study that looked specifically at these factors.