“Somewhere Between an Actual Disease and a Disease”: A Grounded Theory Study on Diagnosing FNDs From a Multi-Informant Perspective 2023 Sireci et al

Full title: “Somewhere Between an Actual Disease and a Disease”: A Grounded Theory Study on Diagnosing Functional Neurological Disorders From a Multi-Informant Perspective

Abstract

Functional Neurological Disorders are characterized by sensory-motor or cognitive symptoms. Recent research has revealed their complex nature involving biological, psychological, and social factors. Care requires a multidisciplinary approach, which, to date, has yet to be considered.

A Constructivist Grounded Theory study was conducted to understand the reasons behind this, exploring Functional Neurological Disorders diagnosis, communication, and understanding from multiple perspectives (patients and healthcare professionals). The core category was “negotiating Functional Neurological Disorders meanings and care amid a dissatisfying dichotomy,” with sub-categories: i) seeking to “word” the disease, ii) exposing reductionism, and iii) a pluralist vision emerging. Diagnosing and communicating Functional Neurological Disorders is a process of negotiating meanings and care that hinges on participants’ diverse ontological perspectives regarding the condition.

Results highlight the difficulty in finding common ground and achieving mutual understanding among the various viewpoints, creating a challenge in establishing a unified approach to Functional Neurological Disorders care. In this context, only a few healthcare professionals emphasized the potential benefits of increased integration. A shift is required from a reductionist to an integrated biopsychosocial perspective to develop a more cohesive approach. Defining a medical paradigm through dialogue with teams and patients is essential in addressing Functional Neurological Disorders effectively. Furthermore, the required interdisciplinary approach holds the potential to mitigate the dissatisfaction arising from fragmented and compartmentalized care (the “dissatisfying dichotomy”) experienced by our participants. It signifies a comprehensive strategy that could address the concerns of all involved parties and enhance the overall quality of care provided.

Paywall, https://journals.sagepub.com/doi/10.1177/10497323231216346

 

Well this smells like people working for insurance companies trying to pass diseases off as mental and only requiring talking therapy again, because it is cheap.

I want to mention the way insurance companies have been doing this for years, decades, which is why the US govt passed two mental health and addiction equity/parity acts in 1996 and 2008, specifically to address insurers' behaviour.
https://en.wikipedia.org/wiki/Mental_Health_Parity_Act

Which they did to an extent ["The Mental Health Parity and Addiction Equity Act (MHPAEA) Evaluation Study: Impact on Quantitative Treatment Limits" https://pubmed.ncbi.nlm.nih.gov/27974003/ ], though it stands to reason the financial motive for reducing therapy costs has not gone away.

IMHO medical insurers limiting therapy cannot be seen as ethical. It is not welcome behaviour and this kind of paper is IMHO comparable to VW faking emissions tests for example, i.e. should be criminal.

Which is why I say this looks like something between an insurance contract clause and a lawsuit.

Plus is claiming this is "Constructivist Grounded Theory", really a wolf in sheeps clothing?

 

The current approach to psychosomatic medicine is, obviously, already biopsychosocial so this is just bizarre. It's also the reason why it's failing. Although it's certainly true that there is a problem with a reductionist approach, and this is also their own fault as knowing a precise pathology that is unique to a disease and universal to all patients is the demand medicine makes. They don't have to, though, and the alternative is not woo woo pseudoscience.

And the whole "difficulty" they talk of is that they're pushing nonsense onto patients and the patients reject the nonsense but they can't accept it. It's even well-documented. They basically just invent false problems, like whatever the hell kind of point they're trying to make over "dichotomy", instead of recognizing that they have a problem and that until that problem is addressed they will simply never make any progress.

Even the whole "negotiating" with patients presented as some never-tried-before idea when it's been the case for years is plain absurd. It's just not credible that people in this field don't understand that they're just pushing the same BS their predecessors did in endless loops.

What bizarre nonsense yet again. Even farmers shovel less bullshit than this, and in modern industrial farms, they even have large conveyor belts working 24/7 for it.

 

Selected quotes from introduction (most references stripped) —

 

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Results cont'd —

 

Selected quotes from discussion —

 

Love the way they label ‘anything else’ as a perspective with a derogatory term in order to pretend theirs adds up by saying ‘shifting from a reductionist perspective to biopsychosocial’

 

What an odd paper. Interesting quotes, @SNT Gatchaman. Talks about dichotomy, but frankly it's more like cognitive dissonance. Bringing up "negative energy" doesn't really speak well of the "other side". They really are talking about the old conversion disorder, are still trying to tune up the narratives so that they can inject just enough science into it to make them palatable, aka pseudoscience.

It's especially odd that they are trying to speak of a dichotomy while bringing up the perception that it means "not a disease", despite this being the literal definition, with the common framing of "not otherwise explained by known pathology". It's not exactly subtle either, it's the definition.

You find similar crises of conscience in politics, when people try to do something obviously wrong, something obviously immoral, even monstrous, to other people, and try to find justifications for why it's OK with "those people" or just this occasion.

The recurrence of past tense about things that aren't just current, but even advocated in a later sentence, speaks very much to the cognitive dissonance. They know that it's wrong, they just can't stop doing it because the ends justify the means, and the contradictions are just their imperfect knowledge of the psychological processes, not the biological explanations. Or as they have preferred to say for a few decades, the biopsychosocial processes, which are 99% part psychological and 1% social.

The only real dichotomy here is that psychosomatic medicine is not scientific, it is based on faith, myths and tradition, and on that it stands in sharp contrast with medical knowledge, which has to be based on solid, replicable science. They simply cannot work together, and yet this is exactly what psychosomatic aims to do, what it's built to do.

 

Of course constructivism is basically what it is in any context ‘rewriting history’

I have a friend I used to regularly have to ask after they’d said something ‘did you just make that up?’or ‘is that the truth?’

and they’d laugh and own up. and respect me for calling it out.

I had a really interesting convo with them years ago and because of their background in politics they said ‘yes I’m a constructivist, do you know the term constructivism from politics etc’ and noted why wouldn’t they rewrite history to make themselves feel better

anyway long and short is that it’s a term used in many subject areas and doesn’t really hide the meaning of it not being rooted in science or truth finding… so a weird approach surely?

 

100% agree. In fact I’d say most don’t believe the BPSm BS when they first heard it about ‘CFS’ to the point you are arguing with them that so many people do and why you can’t just ‘go to the doctor’ (because too many are deluded by it all).

but then the first to change are the ones you knew were of the type to ‘always put themselves first’ … because types are gonna do what they do , and I think the BPSm storytelling has got grip merely as post-hoc justification they initially struggle to keep a straight face with then eventually love the power differential it gives them.

Hence it disgustingly weaponising accusations of mental deficiency- which to me is like a whole are of medicine doing the opposite if when we all had to learn that eg ‘just because a stroke patient speaks differently doesn’t mean they aren’t still very intelligent so shouldn’t be being talked down to’ going around spreading rumours that they ‘can’t think right’ anymore and undermine that.

I think the next group is those in professions and jobs where it suits them to eg patronise others and ‘motivate’ rather than listen properly and get to the bottom of things properly. Again because their preferred default is any excuse why their behaviour isn’t welcome or seen as right can be justified by them as ‘the other persons problem’ by hearing stuff dissing us.

EDIT: there is a particular weakness here I notice in those who are from arts subject backgrounds, (and education degrees) and I assume it is the storytelling and skillset/way of thinking of those but it really has rung true. I just think the simple-story making you think you've 'got' a 'whole science' just by parroting that has something to do with it. But I am currently finding watching that one closely fascinating.

then the third and most immoral is the rift they’ve deliberately put between us and those who do have mental health conditions (by pretending our issue isn’t harmful treatment but ‘denial’) . That one is more complex and mixed (with some really having misplaced 'good intentions' and wanting to share their experience etc). I’ve a lot of sympathy that area is often terribly served by the very same people and is a lump and dump too. I won’t go into more detail now as not well enough to get nuance right


However yes indeed the BPSm is using a psychology trick on other people and isn’t about anything to do with medicine or believability but what it ‘sells’ to said others ‘if you claim it’s right’ etc. and yes all of that happens without those who do it do themselves knowing that’s what they are doing often. Particularly when you’ve got that nice backstop phenomena of group psych and workplace rules making people follow it (so they’d have to believe it or feel bad about what they do etc)


It’d be fascinating if it wasn’t just about one of the most destructive things you could do to a person - writing out their identity and existence

 

eh? 'yet to be considered'?

its all that seems to get considered!

 

More like a wolf in wolf's clothing then, perhaps?

 

That one is seriously baffling and easy to overlook but it's still just utterly shocking. It's pathological liar level of pissing on your leg and assuring you that it's raining, while they follow you around to make sure you get the most of it.

People who are willing to blatantly lie about such obviously false details can pretty much be assumed to be willing to lie about everything. Or they are fully delusional, regardless they either don't value what's true or false, or don't care whether there's any difference.

It's easy to get hung up on other obvious lies, or weird variations of the truth that change how it's understood, but this here, this is just shocking disregard for basic facts. From people who argue philosophically about things they don't understand, using a model where it is us who don't understand, when philosophy is fundamentally the study of what is true.

George Orwell would be utterly puzzled by this. These people are under no pressure to misrepresent reality, to lie this blatantly. It brings them no benefits whatsoever. And yet they do just as fully as if they had a knife to their throat or if the life of their family hung on them telling those lies. Beliefs are freaking weird.

 

But if FNDs are now recognized to have biological factors, doesn't that mean there is organic disease and therefore that they are not FNDs? Also, they are overstating the prevalence of FNDs, aren't they?

 

Not if they change what words mean.

 

Isn't that the truth!

You know, a long time ago before I got sick and still had a working brain I did a degree in philosophy. Every time I read this stuff it just sounds like such a misunderstanding of mind vs body, which philosophers have worked on for centuries. I mean even something really simple like saying they will fix dualism by putting the mind and body back together. That conceptualization is a facet of dualism!

Look at it like this: Can you put your right and left hands together? Yes. Why? Because they are two different hands. Can you put your right hand together with your right hand? No. It's already a unit that can't be joined to itself. The same goes for a mind and body. If you can put them together, why you have just proved they are two separate items. You haven't solved dualism, you have created it.

I really think that FNDs, as currently described, necessarily entail a non-physical mind that can interact with a physical brain. That doesn't line up with my understanding of how reality works. It's analogous to a physicist thinking gravity is a magic force field.

 

And really, the philosophical alternatives to dualism are much more interesting, albeit harder to conceptualize. That's why I think dualism remains so popular. A mind body interaction where there is just one thing that feels like two things is so much harder to grasp.

 

IMHO as always, follow the money and the question is what treatment is recommended for "FND"?

Surprise surprise, talking therapies!

From where I am sitting, the whole point of BPS fictions about FND is they justify gaslighting as therapy for physiological neurological disease, not because it can treat such conditions but because it is cheaper than thorough investigation.

For the medical insurance therapy market, this is propaganda to enable cost cutting.

They have retreated to the position they don't need to claim the entire disease is psychological, just some of it, to justify gaslighting as magical medicine which can unlock recovery, which is snake oil but it is cheap snake oil.

So it serves the same purpose as claiming psychosomatic illness but creates an area of doubt for those conditions where science shows real evidence of physiological illness to bamboozle the law.