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

[Trish]

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[Hutan]

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[Sasha]

My bolding:

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.

Do you mean that if all we have is poor studies, we should take their positive results at face value because that's all we have?

If so, what is it about them being all that we have that means that we should take their positive results at face value?

 

[Utsikt]

In terms of ME/CFS, here is a study showing that expectation affects treatment outcome:

https://www.sciencedirect.com/science/article/abs/pii/S0022399916300319

See this critique - the underlying study is on par with PACE (so completely useless).

https://www.s4me.info/threads/multi...f-the-fatigo-trial-2018-vink-vink-niese.5263/

and that stress management skills reduce fatigue:

https://www.sciencedirect.com/science/article/abs/pii/S088915911200061X

This was a study with the Fukuda criteria. It used the perceived stress scale (PSS) (I believe it’s this). It also used the CES-D (I believe it’s this) and POMS (I believe it’s this). Edit: they took some spit samples and a blood draw as well.

I would highly recommend that you read the section on limitations (4.4.) - there are many!

This pretty much sums it up - it might have been the other way around. And it in no way proves that stress management reduces fatigue like you claimed, in fact the study design isn’t able to prove causation at all.

Since all symptom and psychological measures were based on self-reports at the same point in time it is unclear whether stress management skills predated fluctuations in distress and fatigue.

To be honest, it puzzles me that you actually went beyond the already over-eager claims of the authors in this study. You claimed causation while they spoke of association, albeit with a clear bias towards one casual direction.

That might not have been your intention, you might have forgotten to modify your claim by saying might? But precision matters, I can’t assume you meant one thing when you said something else.

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

https://www.sciencedirect.com/science/article/abs/pii/S002239999800021X

Thread here:
https://www.s4me.info/threads/illne...yndrome-1998-deale-chalder-and-wessely.43619/

TL;DR: it’s fatally flawed.

It seems to me like the science doesn’t back your claims after all, @dundrum

 

[dundrum]

See this critique - the underlying study is on par with PACE (so completely useless).

https://www.s4me.info/threads/multi...f-the-fatigo-trial-2018-vink-vink-niese.5263/

To be honest, it puzzles me that you actually went beyond the already over-eager claims of the authors in this study. You claimed causation while they spoke of association, albeit with a clear bias towards one casual direction.

That might not have been your intention, you might have forgotten to modify your claim by saying might? But precision matters, I can’t assume you meant one thing when you said something else.

Actually, it looks like I posted the write article. The one I posted wasn't even a treatment trial, it just assessed stress management skills. Here is the study I was thinking of:

https://www.sciencedirect.com/science/article/abs/pii/S0022399910004472

and another study found greater stress management skills are associated with lower PEM and greater CAR:

https://www.sciencedirect.com/science/article/abs/pii/S0306453014002509

 

[Utsikt]

Here is the study I was thinking of:

https://www.sciencedirect.com/science/article/abs/pii/S0022399910004472

Fukuda, open label, subjective outcomes, a control group that got a lot less attention, 44/113 not able to participate.

PSS, POMS and TND are all susceptible to reframing instead of capturing actual effects. I’m not familiar with QOLI. The CDC CFS symptom inventory only asks about a very rough estimate of the frequency and severity of symptoms the past month. That is not sufficient to capture PEM.

The changes in the intervention group for PSS are minuscule 29.22 to 27.11 on a scale to 40. Same for CDC CFS symptoms, from 2.07 to 2.01 on a scale of 1-5. They did report feeling a bit better in terms of QoL and POMS, but that’s expected if you give any patients some attention.

They used an F-test to claim that there were some differences between the groups, but the actually changes are pretty much non-existent.

Here are the limitations they mention themself:

This pilot study is limited by a small sample size,reliance on self-report measures, and lack of a wide ranging measure of fatigue impairment. Given that our sample was predominantly Caucasian women on disability and with a high education, generalizability of results is also in question. It is unknown whether effects found persist beyond the relatively short follow-up period used in this preliminary study, and whether it might have been helpful to have maintenance sessions at the conclusion of the weekly intervention sessions. Selection bias may be a possible limitation as well given that participants were recruited through physician referrals and other methods, such as websites and conferences.Furthermore, although significant differences were found between groups their clinical relevance has yet to be determined.Given that the control condition differed from the CBSM condition in time between intervention completion and post-testing, it may be possible that decrements in the control group may have been caused by the fact that they completed their intervention several weeks before the CBSM group.Alternatively these differences could have been produced by unequal attention time between conditions. Systematic differences in expectations is a possibility and future work should address this issue.

To be blunt: Why have you not caught any of this yourself? Or does this imply that you have, but you’re okay with it?

 

[Hutan]

and another study found greater stress management skills are associated with lower PEM and greater CAR:

https://www.sciencedirect.com/science/article/abs/pii/S0306453014002509

I've had a look at that paper and will make a thread for it if I get time.
Edit:
Stress Management Skills, Cortisol Awakening Response and Post-Exertional Malaise in Chronic Fatigue Syndrome, 2014, Hall, Klimas et al

It has a paywall but from the abstract (edit: Utsikt found an open access link), it looks as though they are suggesting that a higher cortisol awakening response is associated with better self reported stress management skills and reduced pEM symptomology.

But, there is an obvious explanation. People who have no need to be energetic in the morning, getting the children fed and off to school, getting ready for work, rushing off to the bus or driving to work, don't need a pronounced cortisol awakening response. So, all of these things are consequences of ME/CFS severity.

If your ME/CFS severity is bad and you don't work, then you don't need to and won't be rushing about in the morning. You have probably been told that you aren't managing stress well, and you may have internalised that. And increased ME/CFS severity means a lower threshold for PEM, more severe symptoms.

I haven't read the study. It would be interesting to see the detail e.g. how were 'stress management skills' defined. I suspect that that definition would make this study even shakier.

It looks as though the authors (disappointingly including Klimas) have mixed up correlation with causation.

 

[Utsikt]

and another study found greater stress management skills are associated with lower PEM and greater CAR:

https://www.sciencedirect.com/science/article/abs/pii/S0306453014002509

I’m slightly running out of patience with these studies, because they all suffer from the same problems. Vague and insufficient subjective measurements and in this case a vague biomarker. And it’s cross sectional so it can’t really tell us anything, certainly not about the causal directions.

 

[Utsikt]

I've had a look at that paper and will make a thread for it if I get time. It has a paywall but from the abstract

PMC has you covered: https://pmc.ncbi.nlm.nih.gov/articles/PMC4165790/

 

[jnmaciuch]

Actually, it looks like I posted the write article. The one I posted wasn't even a treatment trial, it just assessed stress management skills. Here is the study I was thinking of:

https://www.sciencedirect.com/science/article/abs/pii/S0022399910004472

and another study found greater stress management skills are associated with lower PEM and greater CAR:

https://www.sciencedirect.com/science/article/abs/pii/S0306453014002509

The perceived stress scale used in the second study is full of questions that assume two people taking the test will have a similar functional capacity to accomplish tasks and will only meaningfully differ in perceived ability to tackle those tasks.

you’d be utterly unable to distinguish between someone who feels unable to handle all their tasks because they are emotionally overwhelmed or [edit:] because running errands is extraordinarily draining and painful.

So all this study tells us is that people who have a higher severity of PEM have less capacity to accomplish tasks, and this severity may also be weakly correlated with CAR.

perhaps you were not able to look at the measurement scale used in the study before you linked it. You can view it here.

Added: @Hutan I just saw your earlier post, I suspect you will find the scale used in the study as laughable as I did

 

[dundrum]

To be blunt: Why have you not caught any of this yourself? Or does this imply that you have, but you’re okay with it?

It is what it is. It's a piece of evidence. Certain things are sufficient to junk a study (like lying about primary outcome). Other limitations and biases are good to keep in mind, and look at other studies.

 

[Sasha]

It is what it is. It's a piece of evidence. Certain things are sufficient to junk a study (like lying about primary outcome). Other limitations and biases are good to keep in mind, and look at other studies.

Why are other limitations and biases not enough to junk a study? For example, an open-label trial with subjective measures, where you can place no limit on the effect size of the bias, and it might be enough to make a harmful intervention look like a helpful one?

I have the impression that you think that bias can only amplify an effect, rather than create one out of nothing. This would not be a logical position.

 

[Utsikt]

It is what it is. It's a piece of evidence. Certain things are sufficient to junk a study (like lying about primary outcome). Other limitations and biases are good to keep in mind, and look at other studies.

How can it be a piece of evidence in any reasonable meaning of the word when there are so many sources of bias for those teeny tiny changes?

 

[rvallee]

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.

LMAO. It would be completely impossible to miss.

It would be necessary to get some level of fitness back, but simply to function, that just will never happen.

 

[rvallee]

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.

I would confidently assert that 99% of people would immediately notice and act on this, and I feel that's a very conservative guesstimate. It's frankly a ludicrous scenario, but it is one that has been presented as legitimate by ideologues, who oddly fantasize about such things while ignoring reality.

Exact same process as recovering from acute illness. Once people are no longer constrained by illness, they do more things. It's just fantasy scenarios cooked up for this ideology to think otherwise. Possibly the odd person here and there would need help, but we're talking such tiny numbers that the average specialist would never see one in their entire career.

 

[Kitty]

It's a piece of evidence.

We could probably agree on more if you employed a critical eye.

• The participants in this study were recruited with the wrong diagnostic criteria, so we don't even know if they have ME/CFS
• Nearly 40% weren't able to participate

You've said that you feel we dismiss things too quickly, but look at the above. Nobody would accept this in any other field, would they?

By the way, have you come across the discussions we've had recently about our factsheet project? There's too much of it to expect you to read it all (specially the long thread for the introductory leaflet), but a skim of one page of posts will show you the rigour we've tried to bring to it. We've been quite willing to challenge one another if there's any overstepping of the evidence.

What we're trying to do is drag the science up to the evidential standards of other fields of medicine. Obviously that means we've got a problem: research on ME/CFS has been so shoddy and amateurish that we have almost no hard evidence. But that's where we are, so we have to be honest and say so.

That's the background to many of the comments on this thread. We will come across as hawkish, but we want—we need—to be taken seriously. It means that if a paper can tell us nothing we need to call it out, and if so-called specialists in the biomedical field make stuff up to support their theories, we need to call them out. It isn't reserved solely for psychological research.

 

[dundrum]

We could probably agree on more if you employed a critical eye.

• The participants in this study were recruited with the wrong diagnostic criteria, so we don't even know if they have ME/CFS

It's not the "wrong" criteria though. It's the criteria from the time of the study.

That's the background to many of the comments on this thread. We will come across as hawkish, but we want—we need—to be taken seriously. It means that if a paper can tell us nothing we need to call it out, and if so-called specialists in the biomedical field make stuff up to support their theories, we need to call them out. It isn't reserved solely for psychological research.

Being hawkish is good. But there also seems to be a significant antipathy to anything to do with psychology, and I got that distinct impression from reading the factsheets.

 

[Utsikt]

It's not the "wrong" criteria though. It's the criteria from the time of the study.

I can’t remember the date of the study you’re talking about, but the CCC were published in 2003. How does that fit with the timeline?

 

[Utsikt]

Being hawkish is good. But there also seems to be a significant antipathy to anything to do with psychology, and I got that distinct impression from reading the factsheets.

There is no aversion to psychology per se.

There is, however, an aversion to a lack of scientific rigour. So the resulting perceived aversion to psychology is entirely the fault of psychology itself.

 

[dundrum]

There is no aversion to psychology per se.

There is, however, an aversion to a lack of scientific rigour. So the resulting perceived aversion to psychology is entirely the fault of psychology itself.

But there is definitely an aversion (and/or misunderstandings) to psychology, not simply related to rigour, and that is pretty clear.