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

[Utsikt]

Not even clear to me that you know what robust methodology looks like.

Or the consequences of not using robust methodology..

 

[Trish]

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

It is the wrong criteria when applied to people who are diagnosed with different criteria. The key point being, as I'm sure you are aware, that the early diagnostic criteria such as Oxford and Fukuda did not require PEM. That is a vital difference, as people with PEM have, by definition, a different physiological, symptomatic and ability to function response to exercise than people who don't experience PEM.

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.

We have only published one factstheet so far. The second one is still in development and not public, so the drafts should not be discussed on a public thread. Fact sheet 1 only makes one mention of psychology,

Cognitive behavioural therapy, which aims to change people's behaviour and thinking patterns, is sometimes used for ME/CFS but studies have not shown this approach to be useful in improving the illness.

This is not a general or unevidenced comment about psychology, it is an evidence based comment about one very specific version of CBT, with reference provided.

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

Why is that surprising when we have been subjected to prejudices and practices based on research that his so bad it should not be used as evidence for anything, and many of us have suffered at the hands of ineffective or harmful psychological therapy?

Many people with ME/CFS are happy to be helped to cope with their illness and with other psychological troubles unrelated to ME/CFS by competent therapists and counsellors.

We have psychologist members, including one, Joan Crawford, who is involved in developing guidance for British psychologists on ME/CFS.
https://www.s4me.info/threads/uk-br...ce-on-me-cfs-deadline-9th-october-2024.39995/
Members here welcome that development.

 

[Adrian]

Some examples: no mention of stress as a precipitating factor. Saying that graded exercise has been "not shown to help", then talking about surveys. Similar for CBT. That isn't an accurate portrayal of the evidence.

Even PACE failed to show that GET and CBT helped - so I think the "not shown to help" statement matches the evidence.

 

[Adrian]

It is the wrong criteria when applied to people who are diagnosed with different criteria. The key point being, as I'm sure you are aware, that the early diagnostic criteria such as Oxford and Fukuda did not require PEM. That is a vital difference, as people with PEM have, by definition, a different physiological, symptomatic and ability to function response to exercise than people who don't experience PEM.

Personally I don't think the criteria matter in the sense that if you have a weak methodology you take a set of people characterized by criteria X and show nothing as the methodology is too weak to mitigate biases. If an experiment showed something interesting then it would be worth talking about the selection criteria and subgroups etc

 

[tuha]

@dundrum

Also some years ago after many analysis of PACE trial from experts and ME/CFS organisations and many complains there was an independent UK healthcare authority (I dont remember the name) which examinated around 330 GET/CBT studies in ME/CFS field. The authority said that 310 studies had very bad quality and 20 studies bad quality. There was no study with a good quality!!!
The numbers are not 100 % exact but I think I remember it good but maybe the others have the link to that statement where you can find the exact numbers.
Is it not scandalous such a bad quality?

 

[Yann04]

@dundrum

Also some years ago after many analysis of PACE trial from experts and ME/CFS organisations and many complains there was an independent UK healthcare authority (I dont remember the name) which examinated around 330 GET/CBT studies in ME/CFS field. The authority said that 310 studies had very bad quality and 20 studies bad quality. There was no study with a good quality!!!
The numbers are not 100 % exact but I think I remember it good but maybe the others have the link to that statement where you can find the exact numbers.
Is it not scandalous such a bad quality?

And IIRC the committee that found that had a bunch of BPS people in it.

 

[Jonathan Edwards]

It started in 2006. Klimas is one of the authors of ICC, which was published in 2011.

Are you confusing ICC with CCC (2003)?

ICC was a sort of retrograde move back to 'ME' after CCC had made a reasonably sensible stab at defining ME/CFS as the illness described by both terms but requiring PEM to avoid including general chronic fatigue. ICC was all about trying to define a 'neuroimmune' disease based on speculative ideas about causation that have mostly not stood up and at the time were very dubious.

 

[Sasha]

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

Have you read my Expert Witness statement to NICE?

I have the impression that you haven't read @Jonathan Edwards's expert witness statement, @dundrum. It's here, starting on p.5. I don't think it's possible to claim to be familiar with the critiques of PACE and GET/CBT studies generally if you're not familiar with the arguments made in that statement.

To talk about rigour in psychological studies, it's necessary to know what rigour looks like.

 

[Evergreen]

The problem is there are no objective measures. We only have subjective ones (fatigue, etc). That's the reality.

The main point you make is that it is subjective, and yes it is, but that is the nature of pain. There are no objective measures. We have to believe the patients when they tell us they are in pain, and when they are in less pain. Yes, that is subject to bias. That doesn't mean the study is worthless. It is based on sound neuroscience, and they seemed to do everything they could to reduce bias (including having the placebo group).

We have psychologist members, including one, Joan Crawford, who is involved in developing guidance for British psychologists on ME/CFS.

Speaking of @Joan Crawford, she directed me to this asthma paper which illustrates the problem with subjective outcomes better than anything else I've seen, and demonstrates that yes, unblinded studies with subjective outcomes are worthless for telling us whether the interventions being trialled are effective or not. https://www.nejm.org/doi/full/10.1056/NEJMoa1103319

Here's figure 4 from the paper, where the placebo inhaler and sham acupuncture perform nearly as well as the effective albuterol inhaler on subjective outcomes:



And here's figure 3 of the paper, where the objective outcome clarifies that albuterol is effective, while the placebo inhaler and sham acupuncture are revealed to be as useless as no intervention:


In the BPS part of the ME/CFS research world, we are swimming in figure 4s.

 

[Utsikt]

Speaking of Joan Crawford, she directed me to this asthma paper which illustrates the problem with subjective outcomes better than anything else I've seen, and demonstrates that yes, unblinded studies with subjective outcomes are worthless for telling us whether the interventions being trialled are effective or not. https://www.nejm.org/doi/full/10.1056/NEJMoa1103319

Here's figure 4 from the paper, where the placebo inhaler and sham acupuncture perform nearly as well as the effective albuterol inhaler on subjective outcomes:

View attachment 25822

And here's figure 3 of the paper, where the objective outcome clarifies that albuterol is effective, while the placebo inhaler and sham acupuncture are revealed to be as useless as no intervention:

View attachment 25820
In the BPS part of the ME/CFS research world, we are swimming in figure 4s.

New thread here: https://www.s4me.info/threads/activ...rvention-in-asthma-2011-wechsler-et-al.43655/

 

[dundrum]

I have the impression that you haven't read @Jonathan Edwards's expert witness statement, @dundrum. It's here, starting on p.5. I don't think it's possible to claim to be familiar with the critiques of PACE and GET/CBT studies generally if you're not familiar with the arguments made in that statement.

To talk about rigour in psychological studies, it's necessary to know what rigour looks like.

Yes, I'm familiar with the arguments.

 

[rvallee]

You've said that you feel we dismiss things too quickly

Which again misses out on the fact that this has been ongoing for several decades, and that many members of this forum have been at it for years. We've seen all this. Many times. This field is built entirely on bad studies, all of which were conducted after the model was invented. They invented the model before they had any evidence.

The IOM/NAM report dismissed most of it as too low quality to interpret. So did NICE. So did IQWIG. And many others. This is the peril of relying on bad evidence: the bad part far outweighs the evidence part.

 

[dundrum]

Are you confusing ICC with CCC (2003)?

ICC was a sort of retrograde move back to 'ME' after CCC had made a reasonably sensible stab at defining ME/CFS as the illness described by both terms but requiring PEM to avoid including general chronic fatigue. ICC was all about trying to define a 'neuroimmune' disease based on speculative ideas about causation that have mostly not stood up and at the time were very dubious.

No, I'm not. They are two different criteria, and research uses them both. I agree with your points about ICC. All the criteria are somewhat subjective. Cognitive dysfunction is entirely subjective when diagnosed.

 

[dundrum]

@dundrum

Also some years ago after many analysis of PACE trial from experts and ME/CFS organisations and many complains there was an independent UK healthcare authority (I dont remember the name) which examinated around 330 GET/CBT studies in ME/CFS field. The authority said that 310 studies had very bad quality and 20 studies bad quality. There was no study with a good quality!!!
The numbers are not 100 % exact but I think I remember it good but maybe the others have the link to that statement where you can find the exact numbers.
Is it not scandalous such a bad quality?

NICE downgraded the evidence due to indirectness (not requiring PEM). It wasn't due to the quality of the evidence itself.

 

[dundrum]

Even PACE failed to show that GET and CBT helped - so I think the "not shown to help" statement matches the evidence.

But it didn't. It showed statistically significant improvements for CBT and GET.

 

[rvallee]

I would say there's an aversion to claims of psychological causation from observational studies designed to find associations only and to claims of psychological treatment from unblinded trials relying on subjective outcomes. Since there is a constant stream of such studies in high profile journals, it is understandable that commentary on the forum would come across as "anti-psychology."

We are also very much just as anti-astrology, anti-homeopathy and anti-Scientology if it comes to it, for the exact same reasons. Actually, we would also be just as anti-podiatry or anti-dermatology, if were to frame things this way. They just don't really have a significant presence in the literature.

The idea that this aversion comes from any other reason is frankly insulting. So is the idea that this hasn't been tried, explored or researched fully enough. It has. Long ago.

 

[dundrum]

Why is that surprising when we have been subjected to prejudices and practices based on research that his so bad it should not be used as evidence for anything, and many of us have suffered at the hands of ineffective or harmful psychological therapy?

Many people with ME/CFS are happy to be helped to cope with their illness and with other psychological troubles unrelated to ME/CFS by competent therapists and counsellors.

We have psychologist members, including one, Joan Crawford, who is involved in developing guidance for British psychologists on ME/CFS.
https://www.s4me.info/threads/uk-br...ce-on-me-cfs-deadline-9th-october-2024.39995/
Members here welcome that development.

It's certainly understandable, but very unhelpful in a number of ways.

 

[dundrum]

We are also very much just as anti-astrology, anti-homeopathy and anti-Scientology if it comes to it, for the exact same reasons. Actually, we would also be just as anti-podiatry or anti-dermatology, if were to frame things this way. They just don't really have a significant presence in the literature.

The idea that this aversion comes from any other reason is frankly insulting. So is the idea that this hasn't been tried, explored or researched fully enough. It has. Long ago.

It's frankly insulting and ridiculous to equate psychology with astrology and astrology and Scientology.

 

[dundrum]

There is no evidence for stress as a precipitating factor. We’ve been over this many times already. And GET was not shown to help in studies. The same for CBT.

Actually there are multiple studies, as has been pointed out. I think what you mean is that you don't agree they are high enough quality.

 

[dundrum]

@dundrum

No, there is no aversion to psychology. I lead a group of about 1000 ME/CFS patients in my country and many of them visite psychologists/psychiatrists. Like in many chronical conditions, the life is not easy so they do psychotherapie, take AD and so on. In this case we dont have any problem with psychology.
The problem starts when you again and again say that GET/CBT help us. Listen to the patients. In my group there is noone who would say that GET/CBT helped him. You know many especially new patients they actually do a kind of GET therapie. They go throught their limits every day. I warn them but they often dont listen. And it always finish with a crash and huge worsening of your health and often forever. The only thing which help is to respect your energy limits, what is opposite to GET.

I can tell you my example. I pushed myself several years day by day and I finished with very bad worsening of my health. I was the lucky one that my health started to improve slowly after 2 years. The only thing which I did was respecting my new energy limits. I could walk 10 minutes a day and sit 1 hour with my computer, the other hours I had to lie down. Than suddenly one day I woke up and I could do 30 minutes walk. So in this disease it works differently. It doesnt help to increase slowly your daily activity but you have to respect your limits which gives you chance to improve your limits.

So go to help the patients, they are often in a very desperate situation, nobody is against psychlogy but dont force them to the therapies which dont work.

And yes, many patients are angry because if you check the history the psychiatry/psychology stopped the biomedical research in ME/CFS for at least 40 years. The grants for ME/CFS biomedical research were blocked because many psychiatrists in the grant commisions were against biomedical research and always said that ME/CFS is psychosomatic. You didnt give us the chance for better life to research our disease and this is the biggest scandal.

The big problem of todays medicine is if we dont know what´s wrong with the patient it has to be psychosomatic :-(

Try to listen to the patients - you can learn a lot from them and focus on how to improve psychology.

And believe me - for all of us if GET would work, this would be the easiest way to improve our health, everyone would do it. We dont know nasty drugs, many of us were very sportif we would love to do sport again. But it simply doesnt work.

Tuha, I completely agree with everything you say. You seem to be assuming I'm saying something that I'm not. I'm very familiar with ME/CFS, and I listen to patients. However, if you listen to patients you will see that psychological factors are important for many. This doesn't mean they're pushing through or ignoring symptoms.