BPS Thought experiment: What would happen if a ME/CFS patient developed Alzheimers/Dementia?

[EndME]

The biopsychosocial briefly model claims that ME/CFS is an illness caused by wrong beliefs about ones state with a form of feedback loop feeding into deconditioing which in turn perpetuates these beliefs (similarly the intramural study places a central focus on deconditioning).

If a patient was to develop Alzheimers and/or Dementia (or perhaps a different neurological condition with similar ramifications) they ought to forget these illness beliefs sooner or later and as such their ME/CFS would have to resolve eventually.

Thus to prove that ME/CFS is not psychological (at least not in all cases) it would suffice to find a patient with ME/CFS that goes on to develop Dementia but who still describes the same symptoms of ME/CFS.

Do these lines of thought involve any fundamental flaws?

On the other hand finding a patient whose ME/CFS is cured by Dementia would not be sufficient to prove that ME/CFS is a BPS condition as Dementia compromises physical processes which could influence biological processes in ME/CFS.

Of course there would be rather severe complications in practice such as dementia influencing activity patterns, patients not being able to recall their reactions to exertion, dementia patients developing comorbidities that mimic ME/CFS or comorbidities going unnoticed or that become harder to disentangle due to Dementia, or that the thoughts that influence beliefs in ME/CFS would only be affected by late stage dementia etc. In particular something like the Canadian Consensus criteria will become harder to verify due to the possibility of false positives (sleep dysfunction, impairment of concentration and short-term memory consolidation, disorientation, fatigue, weight change, Loss of adaptability and worsening symptoms with stress and many more may all be symptoms of Dementia) combined with patients not being able to recall and/or comprehend their situation.

Some might even try to argue that dementia would somehow leave subconscious ME/CFS beliefs untouched, but I think such explanations will be running into muddy water rather quickly.

 

[Wonko]

Given current healthcare beliefs about ME/CFS then, to me, it seems very unlikely that anyone with that label would ever meet the threshold for diagnosis, as anything we say, or anything said by those with illness beliefs we have 'contaminated' is automatically, wout thought or consideration, discounted and ignored, of something like dementia, so the situation could never exist.

 

[SNT Gatchaman]

Some might even try to argue that dementia would somehow leave subconscious ME/CFS beliefs untouched, but I think such explanations will be running into muddy water rather quickly.

Yeah I think BPS would just argue that the abnormal illness beliefs are long-held, so persist, just as pwAD tend to maintain their long-held memories and experience time-shifting.

 

[Yann04]

I love the idea of the thought experiment @EndME But I’m not sure there is any evidence (even a biomarker)*, that will change BPS people’s minds.

* After all, the concept of psychosomatic illness wasn’t originally that there is nothing wrong in the body, but that “thoughts and behaviours” can cause a physical illness, early research involved doing things like sketching a “cardiac type of personality” — a theoretical personality that made people more prone to heart disease. etc.

 

[Peter T]

I probably should not add it here, but it was a family joke, that as my mother’s Alzheimer’s progressed her hearing improved, that she forgot she was hearing impaired.

It may have been that she simply stopped asking people to repeat or similar, but subjectively it did seem that she was hearing better. So similarly with ME/CFS it could be that people’s reporting and even subjective experience of their symptoms changes with a dementia even if their underlying condition remains stable.

 

[bobbler]

The biopsychosocial briefly model claims that ME/CFS is an illness caused by wrong beliefs about ones state with a form of feedback loop feeding into deconditioing which in turn perpetuates these beliefs (similarly the intramural study places a central focus on deconditioning).

If a patient was to develop Alzheimers and/or Dementia (or perhaps a different neurological condition with similar ramifications) they ought to forget these illness beliefs sooner or later and as such their ME/CFS would have to resolve eventually.

Thus to prove that ME/CFS is not psychological (at least not in all cases) it would suffice to find a patient with ME/CFS that goes on to develop Dementia but who still describes the same symptoms of ME/CFS.

Do these lines of thought involve any fundamental flaws?

On the other hand finding a patient whose ME/CFS is cured by Dementia would not be sufficient to prove that ME/CFS is a BPS condition as Dementia compromises physical processes which could influence biological processes in ME/CFS.

Of course there would be rather severe complications in practice such as dementia influencing activity patterns, patients not being able to recall their reactions to exertion, dementia patients developing comorbidities that mimic ME/CFS or comorbidities going unnoticed or that become harder to disentangle due to Dementia, or that the thoughts that influence beliefs in ME/CFS would only be affected by late stage dementia etc. In particular something like the Canadian Consensus criteria will become harder to verify due to the possibility of false positives (sleep dysfunction, impairment of concentration and short-term memory consolidation, disorientation, fatigue, weight change, Loss of adaptability and worsening symptoms with stress and many more may all be symptoms of Dementia) combined with patients not being able to recall and/or comprehend their situation.

Some might even try to argue that dementia would somehow leave subconscious ME/CFS beliefs untouched, but I think such explanations will be running into muddy water rather quickly.

The issue is the way that dementia tends to progress - it isn’t normally I don’t think, ‘complete’ all day everyday. And certain types it is the most recent ‘prospective’ stuff people forget ahead of ‘episodic memory’ and the more historical.

as it becomes around the point someone might be diagnosed they might just seem like they can’t cope as well with eg daily chores and bills etc . I can almost see those with combined me/cfs being likely (if they didn’t have a good support system) being assumed to be this earlier because of the bad days combining with it. My pint being those observing might put me/cfs things down to the dementia.

Me/cfs is complicated enough as it is to keep track of but if you had both I’m not sure what you’d get someone to report on - it would need to be either a simple measure or.. a tracking app. But you’d need the ‘before’ comparator for that…. And there isn’t some ‘clean break’ but often quite a lot if years of struggling so how do you know that was the before in hindsight? By the time some of these conditions get to the point of forgetting people they see often then are really close it’s pretty bad as the other stuff is far progressed so I’m not sure how easy it would be to say someone forgot they had ME anyway because they might forget the name or ability to explain but still ‘know’ if that makes sense.

I think the interesting part of it is if these people haven’t been moved under the care of the same part of mental health all this bps stuff comes from. But if some are under good geriatricians who might observe. But you’d also have similar issues with people pleasing , certainly as many older persons are as terrified as us of losing their freedom and home by being out somewhere (eg into a care home)

but it’s more likely to affect peoples ability to manage their me/cfs first rather than memory of it at some point. I guess that’s the same as the 2007 cfs-CBT did to everyone in some aspects

 

[bobbler]

I love the idea of the thought experiment @EndME But I’m not sure there is any evidence (even a biomarker)*, that will change BPS people’s minds.

* After all, the concept of psychosomatic illness wasn’t originally that there is nothing wrong in the body, but that “thoughts and behaviours” can cause a physical illness, early research involved doing things like sketching a “cardiac type of personality” — a theoretical personality that made people more prone to heart disease. etc.

Yeah you can see them using the whole ‘mind causes body’ tripe

which is weaponising that they’ve deliberately reduced peoples understanding of what was actually known about the brain and cognition from 2000. Into a blob of ‘if the minds not well’

they’ve wrecked scientific psychology and sent it backwards to the dark ages too as much as medicine

 

[bobbler]

Yeah I think BPS would just argue that the abnormal illness beliefs are long-held, so persist, just as pwAD tend to maintain their long-held memories and experience time-shifting.

And lots of these issues end up being ‘treated’ chemically more at a certain age eg guven tablets to sleep at right time, wee at right time etc based on carers reports of ‘behaviour’ over how someone ‘feels in themself’ and in fact imagine having PEM keeping you awake until 3am and being 80 with dementia and having a carer who wasn’t your family describing it to a medical professional then expecting to be heard as anything convincing when you try to explain PEM and ME when you’ve dementia on your record

vs if you didn’t have an external carer and could keep schtum on that and stay in your home

 

[EndME]

I love the idea of the thought experiment @EndME But I’m not sure there is any evidence (even a biomarker)*, that will change BPS people’s minds.

I see little value in trying to change everybody's mind, that ought to be impossible. As Steven Weinberg put it "All logical arguments can be defeated by the simple refusal to reason logically", but perhaps it matters to be able to change the mind of those that are able to reason logically.

Given current healthcare beliefs about ME/CFS then, to me, it seems very unlikely that anyone with that label would ever meet the threshold for diagnosis, as anything we say, or anything said by those with illness beliefs we have 'contaminated' is automatically, wout thought or consideration, discounted and ignored, of something like dementia, so the situation could never exist.

I am not quite sure I am able to understand you here. This is purely a thought experiment, rather than anything else.

You would need a pre-established cohort of ME/CFS patients, say all in their 30's, where nobody has dementia. Even if BPS advocates disagree on the diagnostic criteria and ethology nobody denies such patients exist. If you'd have a few million of such patients you could be sure that some would develop dementia without having had natural remission from ME/CFS prior to dementia onset (there's still the theoretical possibility that ME/CFS is a protective factor for the development of dementia in those that reach such an age, but there is currently no evidence for this and nobody has identified a gene overlap or anything else). Those are the ones you would have to track for several decades.

The problem in the thought experiment is of course to then still being able to reliably diagnose ME/CFS in dementia patients when the clinical picture might become awfully complicated and a symptomatic diagnosis according to the CCC becomes extremely difficult when cognitive function is diminished and recalling symptom patterns becomes highly problematic. However, I do think there would be at least theoretical ways to establish this in a smaller subset of patients if one is smart enough in ones setup (For example you focus on patients who have all the very classical ME/CFS symptoms but who also have some very specific ME/CFS symptoms which they have detailed continously for several decades that share no overlap with dementia whatsoever and are easy to assess in people with diminished cognitive functioning but yet can be viewed as characteristic for the ME/CFS of said individuals, for example something distinctive like the reproducible onset of a sore throat after exertion as early warning sign of PEM. I think there are probably better examples as well and others might arise as research progresses, perhaps something like alcohol intolerance would someday fit such a picture as well, but I haven't been able to think of anything specific).

If BPS avdocates view such distinctive symptom patterns as signs of ME/CFS, which they arguably do, prior to the development of dementia and if your study setup is smart enough to find distinctive symptoms that can be separated from dementia (which is where the difficulty lies but at least theoretically it ought to be possible if the clinicans are smart enough), I don't see how they would have grounds to deny an ME/CFS diagnosis in dementia patients.

Yeah I think BPS would just argue that the abnormal illness beliefs are long-held, so persist, just as pwAD tend to maintain their long-held memories and experience time-shifting.

Agree, I think it could be a rather large hurdle in this thought experiment.

So similarly with ME/CFS it could be that people’s reporting and even subjective experience of their symptoms changes with a dementia even if their underlying condition remains stable.

I think this will most definitely be the case. It would require a smart mind to figure out a study setup where both subjective and even objective changes in experience wouldn't nullify results of the experiment.

 

[bobbler]

I see little value in trying to change everybody's mind, that ought to be impossible. As Steven Weinberg put it "All logical arguments can be defeated by the simple refusal to reason logically", but perhaps it matters to be able to change the mind of those that are able to reason logically.



I am not quite sure I am able to understand you here. This is purely a thought experiment, rather than anything else.

You would need a pre-established cohort of ME/CFS patients, say all in their 30's, where nobody has dementia. Even if BPS advocates disagree on the diagnostic criteria and ethology nobody denies such patients exist. If you'd have a few million of such patients you could be sure that some would develop dementia without having had natural remission from ME/CFS prior to dementia onset (there's still the theoretical possibility that ME/CFS is a protective factor for the development of dementia in those that reach such an age, but there is currently no evidence for this and nobody has identified a gene overlap or anything else). Those are the ones you would have to track for several decades.

The problem in the thought experiment is of course to then still being able to reliably diagnose ME/CFS in dementia patients when the clinical picture might become awfully complicated and a symptomatic diagnosis according to the CCC becomes extremely difficult when cognitive function is diminished and recalling symptom patterns becomes highly problematic. However, I do think there would be at least theoretical ways to establish this in a smaller subset of patients if one is smart enough in ones setup (For example you focus on patients who have all the very classical ME/CFS symptoms but who also have some very specific ME/CFS symptoms which they have detailed continously for several decades that share no overlap with dementia whatsoever and are easy to assess in people with diminished cognitive functioning but yet can be viewed as characteristic for the ME/CFS of said individuals, for example something distinctive like the reproducible onset of a sore throat after exertion as early warning sign of PEM. I think there are probably better examples as well and others might arise as research progresses, perhaps something like alcohol intolerance would someday fit such a picture as well, but I haven't been able to think of anything specific).

If BPS avdocates view such distinctive symptom patterns as signs of ME/CFS, which they arguably do, prior to the development of dementia and if your study setup is smart enough to find distinctive symptoms that can be separated from dementia (which is where the difficulty lies but at least theoretically it ought to be possible if the clinicans are smart enough), I don't see how they would have grounds to deny an ME/CFS diagnosis in dementia patients.



Agree, I think it could be a rather large hurdle in this thought experiment.



I think this will most definitely be the case. It would require a smart mind to figure out a study setup where both subjective and even objective changes in experience wouldn't nullify results of the experiment.

The other complications perhaps relate to ‘exertion’ of the different types vs after someone has been diagnosed. It’s quite common people might still eg be able to go for walks but there comes a point where that or other ‘activities’ might be things that others prefer them only to do accompanied. And even within the home what they get left to do unattended shrinks for reasons very different to me/cfs eg in case they leave a job on or bath running.

it depends how little the pwme was able to do / doing before but it could be that the frustrating ‘no ill do it you just stay there’ someone with dementia might end up with (because it’s easier for carers not to have them trying to make the tea etc), not dealing with admin and phone calls to sort things, means a reduction in overall exertion, certainly the ‘hidden load’ we probably all want to scream about when we are eg severe and someone suggests we do nothing all day vs what can be Herculaneum to tick the essential boxes

this reflects an issue we all see with many designs on exercise or pacing or anything which uses getting people to do an arbitrary amount of x vs s control not doing said arbitrary x - that those in the x group just have less left for the other stuff they did before rather than it being ‘on top of’

in effect I’m not sure we’ve a within person ‘each person acting as their own control’ with the main difference being memory. They are thrust into sometimes quite a different situation on other factors.

I mean you could theoretically still 2-day cpet them , ethics aside, but even then if it’s then looking at how long the PEM takes to dissipate and symptoms that’s an interesting question of what might happen. I’d assume for many it would be if not bed-bound around the same latency 12-48 , you never know if that might start to vary within individuals. And if not feeling so awful they stay in bed it being like when we were first diagnosed and many of us probably tried to drag ourselves out (but late once we managed and it took a lot of caffeine etc then still wasn’t great) then having to thrown in the towel at some point , even if it’s quite long in and an even bigger PEM because of it . I guess if the monitor apps/tech gets a good idea of what unwell and PEM looks like that could help here.


That would be complicated to see if they’ve been put on other meds they commonly get given tho. And if they are getting just sat in a chair for hours on end type thing by carers (and weren’t in a need to lie down state/severity) I don’t know whether that would influence the data vs whatever their lives in and out of PEM might have been before

 

[EndME]

in effect I’m not sure we’ve a within person ‘each person acting as their own control’ with the main difference being memory. They are thrust into sometimes quite a different situation on other factors.

Yes, for the majority this cannot work. But for the thought experiment it would suffice to find "one patient who can act as their own control" even if the majority cannot. I think that should be possible, at least theoretically (practically is of course a whole different question, I wouldn't suggest that anybody should waist funding on this philosophical nonsense).

 

[NelliePledge]

Not read the posts. My experience of family member who lived for 20 years with dementia is that it is absolutely not just about being forgetful (comparable to our situation with fatigue).

 

[EndME]

Not read the posts. My experience of family member who lived for 20 years with dementia is that it is absolutely not just about being forgetful (comparable to our situation with fatigue).

100% agree. It certainly impacts far more than memory. It's absolutely horrible, live-destroying and impacts every part of daily living for you and those around you and affects everything that once defined you. The question for me is whether there can arise situations in which there is enough room to distinguish everything horrible that occurs as part of dementia (or a similar condition) from certain events that could be seen characteristic of ME/CFS in a small and smartly chosen subset of individuals.

 

[NelliePledge]

100% agree. It certainly impacts far more than memory. It's absolutely horrible, live-destroying and impacts every part of daily living for you and those around you and affects everything that once defined you. The question for me is whether there can arise situations in which there is enough room to distinguish everything horrible that occurs as part of dementia (or a similar condition) from certain events that could be seen characteristic of ME/CFS in a small and smartly chosen subset of individuals.

I seriously doubt anyone would be able to unpick the complexity

 

[EndME]

I seriously doubt anyone would be able to unpick the complexity

I wouldn't be too sure about that. In the case that dementia is indeed perhaps to complex its possible that someone that is actually knowledgable (rather than being as unknowledgeable as me) might be able to come up with a better example though (possibly some form of brain injury or something enitrely different but still somehow applicable might be simpler).

 

[bobbler]

I wouldn't be too sure about that. In the case that dementia is indeed perhaps to complex its possible that someone that is actually knowledgable (rather than being as unknowledgeable as me) might be able to come up with a better example though (possibly some form of brain injury or something enitrely different but still somehow applicable might be simpler).

Im guessing you are meaning something like the condition the film ‘Memento’ portrays

I’d suspect that losing the ability to form long term memory from short /that type of amnesia isn’t as straight as that either given it’s a descriptive term for something which can have been caused by various things (trauma ie physical head injury, surgical for another condition or said other condition itself etc could all come with other things and might be non-identical even in that issue)

but for the thought experiment purpose it might be quite useful to be basing it on an example that is from a film that defines what is and isn’t affected for x character.

according to that film he basically had to wake up each day and read a post-it he’d written to himself etc

that would interesting but a potentially terrible combo with ME as you wouldn’t know even what you’d done the days before so even the idea of ‘expectations’ being involved in what people do or don’t do would go out the window

 

[NelliePledge]

Dementia is wide ranging and is not linear, my family member lost insight into their own capabilities when still relatively physically fit and able to answer questions quite believably , for example assuring a social worker that they were able to make themself a cup of tea when that was not the case. Hallucinations, delusions, aggression etc etc. I’m talking about one person of course but 20 years of it so in depth experience. I’m not going to argue the point further. I can’t be persuaded of this being feasible, ethics would also need to be addressed.

 

[EndME]

Dementia is wide ranging and is not linear, my family member lost insight into their own capabilities when still relatively physically fit and able to answer questions quite believably , for example assuring a social worker that they were able to make themself a cup of tea when that was not the case. Hallucinations, delusions, aggression etc etc. I’m talking about one person of course but 20 years of it so in depth experience. I’m not going to argue the point further. I can’t be persuaded of this being feasible, ethics would also need to be addressed.

I completely agree and my experience with dementia is exactly the same (and dementia also does not seem like a good fit for the reasons you mentioned). I agree that putting such a thought experiment into reality would never be feasible, probably not even be ethical and additionally would be a massive waste of funding that even if things were to hypothetically work out you still get 0 clues into the pathology underlying ME/CFS. That's why it's purely a thought experiment, rather than anything else. I'm not suggesting that anybody put this into practice, similar to how there is no point to having a cat in a box.

But I think the discussion has illustrated to me that this thought experiment is not well thought out by me, very naive and is rather useless.

 

[Ash]

Dementia is wide ranging and is not linear, my family member lost insight into their own capabilities when still relatively physically fit and able to answer questions quite believably , for example assuring a social worker that they were able to make themself a cup of tea when that was not the case. Hallucinations, delusions, aggression etc etc. I’m talking about one person of course but 20 years of it so in depth experience. I’m not going to argue the point further. I can’t be persuaded of this being feasible, ethics would also need to be addressed.

Yes. Quite.