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

[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.

 

[dundrum]

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?

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

 

[EndME]

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.

Since the factsheets are supposed to be factsheets and free from beliefs and feelings I think it could be very valuable if you could point out where exactly you got that impression from? Where there specific passages or wordings or is it rather from a more general reading?

The factsheets are factsheets so they are focused on hard evidence. Vague ideas on speculative hypotheses in reference to hardly scientific notions from neuroscience and other ideas won't make the cut. Similarly you should note that there is no reference to biological mechanisms with unsubstantial evidence in the factsheets, prevalence numbers aren't overestimated etc.

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

I think you might find that a few (though not enough) psychologists/psychatrists are active on S4ME, others have collaborated with psychologists (Brian Hughes to name one) with others being friendly with psychologists/psychatrists and others visiting them regularly.

 

[Kitty]

But there is definitely an aversion (and/or misunderstandings) to psychology

I think it's just that it can't get to what's actually causing ME/CFS, and we're in such urgent need of disease-modifying drugs. The same goes for all of us, but especially the severely ill people who can't even let daylight into their rooms without triggering horrible symptoms. If you look at it from that point of view, it's not surprising people get a bit impatient with psychological approaches—at best, they're a distraction.

But in the hands of a therapist who really understands ME/CFS, it could potentially have a role with management. I'd have loved to have a counsellor support me with pacing when I was first diagnosed! Struggling to restrict activity enough to stay relatively well seems almost universal; we're all desperate to be able to do more, so we keep trying to squeeze extra things in despite knowing the likely outcome. Not everyone would want pacing support, but some might really value it.

 

[dundrum]

Since the factsheets are supposed to be factsheets and free from beliefs and feelings I think it could be very valuable if you could point out where exactly you got that impression from? Where there specific passages or wordings or is it rather from a more general reading?

The factsheets are factsheets so they are focused on hard evidence. Vague ideas on speculative hypotheses in reference to hardly scientific notions from neuroscience and other ideas won't make the cut. Similarly you should note that there is no reference to biological mechanisms with unsubstantial evidence in the factsheets, prevalence numbers aren't overestimated etc.

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.

 

[dundrum]

I think it's just that it can't get to what's actually causing ME/CFS, and we're in such urgent need of disease-modifying drugs. The same goes for all of us, but especially the severely ill people who can't even let daylight into their rooms without triggering horrible symptoms. If you look at it from that point of view, it's not surprising people get a bit impatient with psychological approaches—at best, they're a distraction.

And yet there are patients who manage to recover from that state using psychosocial tools. It's an assumption to say it "can't get to what's actually causing ME/CFS, and we're in such urgent need of disease-modifying drugs". There are two possibilities: either these patients recovered naturally, or the things they did helped them. It would be useful to look carefully to see which one is the case, and whether there is anything to learn.

 

[jnmaciuch]

Okay, at this point, I think it’s just going to go in circles forever.

 

[AliceLily]

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.

Exactly this. They don't get it.

Okay, at this point, I think it’s just going to go in circles forever.

You can tell they are so set on their point of view. Always this talk of 'fear'. We are not children riddled in the fear they talk about. Above quote.
.

 

[dave30th]

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

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."

 

[dundrum]

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."

Yes, attacking crap science is understandable and laudable. It was more calling people "gullible" if they get suckered into believing their mitochondria are broken after doing a dubious test, saying that stress is purely emotional, or that if someone has a stress related illness it's their own fault, that there's no point looking at psychosocial treatments as they can't help severe people, that the PACE trial is "fraudulent", etc. (And yes, I'm aware that you said it is fraudulent. Not sure I really want to get into that discussion, other than to say I'm aware of your work, and disagree with your reasoning).

 

[Andy]

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

And given the massive amounts of harm and loss caused by psychology, it should not be surprising at all that there is an aversion to psychology - it is something that has been learnt by the patient community through experience. The fact that psychology can't figure this out, or won't admit to it, just shows the massive lack of insight that the field has.

 

[Sean]

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.

Evidence and the models built on it have to reach a minimum standard before it is of any validity, let alone can be safely applied in the clinic and medico-legal advice. The vast majority of psych research into ME/CFS does not reach that standard. At best – and I am being very generous here – it might suggest some further avenues of research.

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

The only thing you have made clear is that you have no intention of taking on board any evidence or argument that weakens the psych based claims.

 

[Turtle]

Yes, attacking crap science is understandable and laudable. It was more calling people "gullible" if they get suckered into believing their mitochondria are broken after doing a dubious test, saying that stress is purely emotional, or that if someone has a stress related illness it's their own fault, that there's no point looking at psychosocial treatments as they can't help severe people, that the PACE trial is "fraudulent", etc. (And yes, I'm aware that you said it is fraudulent. Not sure I really want to get into that discussion, other than to say I'm aware of your work, and disagree with your reasoning).

Please don't use the broken mitochondria again. It hurts and is very denegrating.
Every ME/CFS patient has to find out for themselves what's wrong and how to fix it.. GP's don't know anything, specialists even make us into non-patients.
I don't have any medical training, so I might get things wrong, but don't blame me for that.

I did a one and a half year psychotherapy training, so I do understand psychology.
But I do have an aversion to CBT, claiming they can fix ME/CFS but not delivering real results.