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

[dundrum]

I think undeniable is an absurdly strong claim.

We have very little evidence of any sort of quality that “fear can prevent natural recovery”.

There are plenty of people making the opposite claim that the more you rest and avoid exercise the higher your chances of recovery (and there is no high quality evidence to suggest that either).

We pretty much have linked nothing with lesser / higher chances of recovery reliably except age, illness duration, and illness severity, as far as I’m aware.

When I say undeniable, what I mean is patients saying that they deliberately avoided exercise, or deliberately avoided getting out of bed, because their doctor told them it would be dangerous, or their mitochondria were broken, etc. I would call that definitive evidence, especially when it is the highest profile most severe patients saying those things.

 

[Yann04]

and that fear avoidance is associated with treatment response in ME/CFS:

Or that people who have PEM, avoid exercise, and people who have PEM don’t respond to CBT as well?

 

[dundrum]

Or that people who have PEM, avoid exercise, and people who have PEM don’t respond to CBT as well?

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.

 

[Yann04]

When I say undeniable, what I mean is patients saying that they deliberately avoided exercise, or deliberately avoided getting out of bed, because their doctor told them it would be dangerous, or their mitochondria were broken, etc. I would call that definitive evidence, especially when it is the highest profile most severe patients saying those things. Feel free to start a private discussion, as I'm not going to be putting specific names in public.

What?
People on [twitter or whatever] saying they avoid exercise is definitive evidence that fear avoidance prevents natural recovery?

Surely anyone can see that 1% of the burden of proof of the original claim hasn’t even been reached here.

 

[Yann04]

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.

Again, this is an assumption by you, not a fact, so if your premise relies on the assumption that avoiding exercise impedes recovery, and then your conclusion is that avoiding exercise impedes recovery, you have yourself a circular argument, which means you need a new premise or your point is void.

 

[Trish]

However it's also undeniable that many patients do develop a fear of activity, and that fear can prevent natural recovery.

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?

 

[dundrum]

I think undeniable is an absurdly strong claim.

We have very little evidence of any sort of quality that “fear can prevent natural recovery”.

There are plenty of people making the opposite claim that the more you rest and avoid exercise the higher your chances of recovery (and there is no high quality evidence to suggest that either).

We pretty much have linked nothing with lesser / higher chances of recovery reliably except age, illness duration, and illness severity, as far as I’m aware.

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.

 

[Yann04]

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.

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.

 

[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.