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

[Yann04]

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.

 

[Trish]

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').

Yes, I hope we will be able to do this.

 

[Yann04]

It continues to astonish me that no such paper appears to exist in the literature.

The closest thing I know of would be:

How to prove that your therapy is effective, even when it is not: a guideline, 2015, Cristea & Cuijpers

 

[Trish]

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.

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.

 

[Utsikt]

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.

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.

It continues to astonish me that no such paper appears to exist in the literature.

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/

 

[Sasha]

The closest thing I know of would be:

How to prove that your therapy is effective, even when it is not: a guideline, 2015, Cristea & Cuijpers

Even that's not very close. I think we need a 'BPS trials are rubbish and here's why' paper.

 

[Utsikt]

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.

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.

 

[Yann04]

the diagnostic criteria are based on subjective outcomes,

I’d call 50% reduction in functioning something that could be objectively measured.

 

[Sasha]

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.

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.

 

[Utsikt]

I’d call 50% reduction in functioning something that could be objectively measured.

Good point!

 

[Sean]

So the logic seems fatally flawed, unless I misunderstood it.

You understand it just fine.

 

[Utsikt]

Such a paper could save early-career psychologists from falling down that rabbit-hole;

They’ve had a replication crisis for years. It doesn’t seem to have made much of a difference.

it could alert the medical profession more widely to what is going on, which could lead to change;

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

it could be put into the hands of funding bodies;

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?

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 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.

 

[forestglip]

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.

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.

 

[Yann04]

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.

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.

 

[Sasha]

They’ve had a replication crisis for years. It doesn’t seem to have made much of a difference.

Maybe it has - we don't know that people haven't been put off the field in droves.

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

This is a different issue, though - it's a fundamental design issue that's being ignored. It's a big fat emperor with no clothes on but there's no little boy pointing it out.

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 agree, but I wasn't suggesting that our factsheet do this job - I was saying that a peer-reviewed journal paper could.

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

It wouldn't be the only thing in the courtroom - it could be part of a submission.

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.

I don't think we know what people think!

 

[Kitty]

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.

I don't think it would affect the BPS lobby very much.

I can only think of two reasons they maintain such an untenable position: naked financial interest, or individuals not being ready to confront the fact that they've wasted so much time and effort.

But it would be useful to anyone who's open minded and capable of listening, and there are plenty of those.

 

[Yann04]

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.

Isn’t that beside the point though.

A single outcome (both subjective and objective) has confounders that don’t tell us much. The point is to choose a couple different outcomes and see if there is a consistent story of improvement or not.

I think everyone can agree there is no perfect outcome measure for ME. But the point was the subjective outcomes suffer the exact same flaws of confounders and indirectness as objective ones, but atleast the objective ones are far less impacted by reporting biases and placebos.

As Trish said, her illness drastically changed but Chadler fatigue scale didn’t,

I’d say for me I suffered more debilitating fatigue when I could study part time, than now that I am permanently bedridden, so for example fatigue seems to not be a good proxy for improvement either,

 

[Trish]

I think one of the problems with BPS research is it's largely led by psychiatrists who have come through medical and psychiatric training, which is a field apparently rife with prejudices about symptoms they can't explain or treat medically or psychiatrically. We don't seem to fit in either.

So they invented psychosomatic medicine based on the very shaky foundations of nineteenth century notions of neurasthenia and hysteria.

They decided symptoms they couldn't explain must be created by healthy, attention-seeking, lazy, perfectionist, catastrophising, mostly women, who were too weak to cope with stress, because of psychological and behavioural failings.

Psychologists have a different training, relying a lot on questionnaires to occupy their research students often as research subjects as well as researchers. Hence we have a toxic mix of judgmental doctors who want to get rid of pesky patients who don't get better, and psychologists and other therapists getting hooked on questionnaires and fancy stats trying to prove they provide the solution. They even invented a whole field called health psychology.

The whole thing seems to me to be toxic fantasy.

 

[Kitty]

I think everyone can agree there is no perfect outcome measure for ME.

No, but there are good ones. Actimetry results combined with evidence of a long-lasting change in the ability to participate in work, education or caring, and sport, interests or social activities would tell them a great deal.

If they can't show a substantial change in activity capacity in at least two domains—work-related and leisure-related—it's reasonable to conclude that the intervention being trialled isn't acting on the underlying cause of ME/CFS.

 

[Andy]

I think one of the problems with BPS research is it's largely led by psychiatrists who have come through medical and psychiatric training, which is a field apparently rife with prejudices about symptoms they can't explain or treat medically or psychiatrically. We don't seem to fit in either.

So they invented psychosomatic medicine based on the very shaky foundations of nineteenth century notions of neurasthenia and hysteria.

They decided symptoms they couldn't explain must be created by healthy, attention-seeking, lazy, perfectionist, catastrophising, mostly women, who were too weak to cope with stress, because of psychological and behavioural failings.

Psychologists have a different training, relying a lot on questionnaires to occupy their research students often as research subjects as well as researchers. Hence we have a toxic mix of judgmental doctors who want to get rid of pesky patients who don't get better, and psychologists and other therapists getting hooked on questionnaires and fancy stats trying to prove they provide the solution. They even invented a whole field called health psychology.

The whole thing seems to me to be toxic fantasy.

Add to this an insistence that the only patient voices that matter are those who attend their clinics and give positive feedback. Never mind that this will only ever be a tiny proportion of the patient community, and that repeated, far larger, patient surveys indicate that most find CBT and GET unhelpful at best, harmful at worst.