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

Utsikt said:
The fact that the thing you’re trying to measure is subjective by nature, doesn’t change the inherent unreliability of the subjective outcome measures. It has to be accounted for, even if it’s the best you’ve got. And there is no law that says that your best is good enough for science. So we have to entertain the possibility that it might not be good enough, period.
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I suspect the whole mental health research industry has issues with measurement (too much subjective stuff and also some really badly done questionnaires that shouldn't be used as a measurement scale). But perhaps that just says we need better research into measurement approaches - and with the advent of reasonably good wearables (and even phones that are fairly accurate on step counts) much more is possible. Advances in AI could allow for much better recording at the time or interpretation of activity. (things like automatic speech recognition and sentiment analysis could potentially help).

But if measurement systems are not robust enough to give reliable results then doing research on humans using them is unethical.
 
Sasha said:
But do we know that it's 'mild' patients who tend to go into trials? On the one hand, you'd have to be well enough to deal with the trial, but on the other hand, maybe you'd have to be sick enough to be motivated to take part in the first place.
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I'm mild, currently working full-time and have a family to care for. Taking part of a study doesn't easily fit into my energy budget. I'm not saying that it fits into the energy budget of the more severe patients either, but that the decision making tree could look different for all of us. For example if I had been on disability I might not lose (more) money by having a period of increased exertion and a potential crash, and I wouldn't have to plan resting around work. Two things that prohibits me from taking part in a study (well that and the studies closest to me are of no interest to me/I'm not in the demographic they are looking for).
 
Utsikt said:
Why is that?

My intuition agrees, but I struggle to express why atm.
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I would say that using measurement systems like the Chalder Fatigue questionnnaire as a primary outcome measure in a clinical trial for ME/CFS would be unethical because it cannot provide reliable, relevant or statistically analysable data.

That means that you are asking people to put themselves through a disruptive and potentially harmful treatment program on the promise that it will provide useful information to help their fellow sufferers, when in fact it cannot provide useful data using that questionnaire, so patients are being misled into risking their health to no purpose. They have been asked to sign assent at the start to something that is useless and may harm them on the basis of false information.
 
Trish said:
@dundrum, your participation on this and other threads has used up a lot of energy of members responding and trying to explain to you the problems with much of the BPS research. Some of the people taking the trouble to do this are very sick, and expending precious energy to try to help you understand.
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I've been thinking how useful it would have been during all this to have had a factsheet on why BPS trials produce results that can't be trusted, and that explicitly tackles the profoundly illogical things that proponents say to defend those results (such as 'You can't do unbiased trials therefore you have to trust the results').

We could have saved ourselves the time and energy of producing what has now probably been tens of thousands of words explaining the issues and just pointed to the factsheet instead.

It continues to astonish me that no such paper appears to exist in the literature.
 
What I don’t get is dumdrum seems to argue that subjective measures are more relevent in ME because objective measures don’t directly measure ME.

But neither do the subjective measures!
A fatigue scale or a physical functioning scale is as much of a proxy for measuring ME as actigraphy or a walking test.

So the logic seems fatally flawed, unless I misunderstood it.
 
Sasha said:
I've been thinking how useful it would have been during all this to have had a factsheet on why BPS trials produce results that can't be trusted, and that explicitly tackles the profoundly illogical things that proponents say to defend those results (such as 'You can't do unbiased trials therefore you have to trust the results').
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Yes, I hope we will be able to do this.
 
Yann04 said:
What I don’t get is dumdrum seems to argue that subjective measures are more relevent in ME because objective measures don’t directly measure ME.

But neither do the subjective measures!
A fatigue scale or a physical functioning scale is as much of a proxy for measuring ME as actigraphy or a walking test.

So the logic seems fatally flawed, unless I misunderstood it.
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I agree, for example, the number of steps I can take in a day, the time I can spend upright, and my ability to concentrate for long periods are far more important to me than how 'fatigued' I feel. Steps, time upright and cognitive tests that look at rapid cognitive fatiguability are far more relevant to whether someone can function in a workplace or education than how subjectively 'fatigued' they feel. Use of pain and sleep meds, sleep monitoring are also sources of objective information relevant to ME/CFS.

I score about the same on the infamous Chalder Fatigue questionnaire now I am housebound and mostly in bed as I did when I was able to work part time and care for a family. It simply has little or nothing to do with how ill I am.
 
Sasha said:
We could have saved ourselves the time and energy of producing what has now probably been tens of thousands of words explaining the issues and just pointed to the factsheet instead.
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I’m not sure it would change anything. The problem is that the BPS supporters don’t seem to want to accept the logical conclusions.
Sasha said:
It continues to astonish me that no such paper appears to exist in the literature.
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This paper
https://www.s4me.info/threads/psychology-needs-to-get-tired-of-winning-2022-haeffel.28228/
and this book comes to mind:
https://www.s4me.info/threads/brian-hughes-2018-psychology-in-crisis.5535/
 
Yann04 said:
What I don’t get is dumdrum seems to argue that subjective measures are more relevent in ME because objective measures don’t directly measure ME.

But neither do the subjective measures!
A fatigue scale or a physical functioning scale is as much of a proxy for measuring ME as actigraphy or a walking test.

So the logic seems fatally flawed, unless I misunderstood it.
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They might be arguing that ME/CFS is subjective because the diagnostic criteria are based on subjective outcomes, but that isn’t supported by logic either. Because ME/CFS could very well be caused by an objectively measure thing that we do not know about today.

It would be like saying that MS is partially subjective because MS patients experience fatigue.

@dundrum - feel free to clarify your view on this topic.
 
Utsikt said:
I’m not sure it would change anything. The problem is that the BPS supporters don’t seem to want to accept the logical conclusions.
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Hard-line BPS people seem to defend themselves against rational argument by simply not engaging with it, but they would not be the most important audience. Such a paper could save early-career psychologists from falling down that rabbit-hole; it could alert the medical profession more widely to what is going on, which could lead to change; it could be put into the hands of funding bodies; and if any of the issues ever end up in court (as they did with the PACE FOI tribunal), it would be a handy summary of the issues for judges. I can think of all kinds of uses for it.
 
Sasha said:
Such a paper could save early-career psychologists from falling down that rabbit-hole;
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They’ve had a replication crisis for years. It doesn’t seem to have made much of a difference.
Sasha said:
it could alert the medical profession more widely to what is going on, which could lead to change;
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They have heard about the replication crisis in psychology and there are plenty of critiques of medical research in general.
Sasha said:
it could be put into the hands of funding bodies;
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Why would they put weight on a document created by a forum with no formal power or standing, unless they already agree and recognise that S4ME is a place of scientific rigour?
Sasha said:
and if any of the issues ever end up in court (as they did with the PACE FOI tribunal), it would be a handy summary of the issues for judges.
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I don’t think it would do much in a courtroom - you’d need expert witnesses.

To be clear: I want such a document to exist. I just don’t know how much of an impact it would have because most people seem to have already decided if they rate the BPS science or not.
 
Yann04 said:
What I don’t get is dumdrum seems to argue that subjective measures are more relevent in ME because objective measures don’t directly measure ME.

But neither do the subjective measures!
A fatigue scale or a physical functioning scale is as much of a proxy for measuring ME as actigraphy or a walking test.

So the logic seems fatally flawed, unless I misunderstood it.
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I think that point was mainly about how a subjective scale, in theory, can capture exactly what you're looking for in the full spectrum of patients, since they're being asked about the specific thing in question. While step count or income might not show any changes even if the patient improves.

While I don't think potential issues with the latter mean you should necessarily use the former, I think it's good to think about those kinds of issues with metrics like step count.

I could potentially see how someone mild, who already walks and has a job, improves and feels better, but has no reason to walk more and doesn't have enough improvement to get a raise or a new job. On the plus side, this limitation should make any results that do show increased step count or income even more convincing. And it might encourage researchers to recruit more severely affected people to have more of a chance of seeing an effect.
 
Utsikt said:
They’ve had a replication crisis for years. It doesn’t seem to have made much of a difference.

They have heard about the replication crisis in psychology and there are plenty of critiques of medical research in general.

Why would they put weight on a document created by a forum with no formal power or standing, unless they already agree and recognise that S4ME is a place of scientific rigour?

I don’t think it would do much in a courtroom - you’d need expert witnesses.

To be clear: I want such a document to exist. I just don’t know how much of an impact it would have because most people seem to have already decided if they rate the BPS science or not.
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I think the biggest impact by far would be patients and their family (especially the kind that seem to believe, if it’s published in a prestigious journal it must be true), students who haven’t dug themselves too deep a hole into the ideological bias, and in general third parties.

Looking at the reviews of Brian Hughes book of the crisis in psychology, a lot of the people who rated it best were psychology students.
 
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