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

[Andy]

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

 

[boolybooly]

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.

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.

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?

 

[rvallee]

A shift is required from a reductionist to an integrated biopsychosocial perspective to develop a more cohesive approach

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.

 

[SNT Gatchaman]

Selected quotes from introduction (most references stripped) —

Functional neurological disorders (FNDs) represent one of the most frequent presentations in neurological wards (Stone et al., 2010). They affect 10–30% of neurology outpatients (Carson et al., 2000; Cary et al., 2019), predominantly women and individuals living in rural areas, with low levels of education, and belonging to the lower socio-economic class.

FNDs’ symptoms mimic brain and nervous system disorders but occur without organic disease.

Initially, FNDs were considered psychogenic, attributed solely to psychological factors. The Freudian model of conversion was a prevalent psychological approach, suggesting that emotional stress is converted into physical symptoms. This perspective is still implicit in the DSM5’s alternative conversion disorder (CD) definition. However, recent scientific explanations have shifted toward neuropathophysiological models, challenging the psychological conceptualizations of FNDs. It is now understood that FNDs’ development involves complex interactions between biological, psychological, and social factors.

On the one hand, some HPs still interpret FNDs as primarily associated with psychological factors and beyond their clinical and professional reach. In this context, patients are more likely to pass from one professional to another without receiving clear, honest information or effective treatment. On the other hand, HPs, even considering FNDs as psychogenic, fear missing other relevant diagnoses and complain about the lack of evidence-based therapeutic options.

Patients are not exempt from perceiving the effects of these diagnostic challenges. Many share a sense of uncertainty surrounding the diagnosis and believe it to be an enigma to the medical community.

Once considered psychogenic, these disorders now reveal a complex interplay of biological, psychological, and social factors, challenging traditional conceptualizations. An integrated multidisciplinary approach, recognized as desirable in the literature, holds the potential to not only navigate the diagnostic complexities but also facilitate appropriate interventions for affected individuals. This approach aligns with the evolving understanding of FNDs.

 

[SNT Gatchaman]

Selected quotes from results —

After symptoms appeared, patients faced uncertainty and underwent various exams and consultations with multiple professionals. This process left them feeling tossed around and losing faith in the healthcare system. Many felt misunderstood or not taken seriously, with doctors attributing symptoms to preexisting conditions or dismissing them altogether.

When patients were diagnosed with an FND, many were shocked and had difficulty accepting it. The explanation given often emphasized psychological or psychosomatic factors, leading to mixed feelings of relief and shame. Some patients embraced the diagnosis and started therapy, while others doubted its validity, losing faith in healthcare providers and the proposed treatment. For some patients, the FND diagnosis represented a lack of knowledge by healthcare providers. Being referred to a psychiatrist or psychotherapist offended them, and recognizing stress in their lives did not make a psychogenic explanation more acceptable.

HPs and patients were entangled in an intricate negotiation, attempting to reconcile their differing perspectives and strategies for comprehending and managing FNDs. However, this negotiation ultimately fell short of presenting a definitive solution.

The outcome of this process is a concept characterized as a “dissatisfying dichotomy,” leaving both HPs and patients with limited room for a comprehensive understanding of the disorder and agreeable treatment options.

 

[SNT Gatchaman]

Results cont'd —

A common way to define FNDs by HPs and patients was to oppose it with "real diseases." Implicit in this perception was the idea that FNDs are not real or serious. Consequently, even the term "functional" was employed to convey the idea of the absence of an underlying organic issue, a viewpoint both patients and HPs concurred upon. For example, a physiatrist conveyed, "This is jargon; we know how to recognize the type of patient when they tell you we know this is a functional patient." So, the interviewer asked, "But are you sure she doesn't have any-thing?" She replied, "No, absolutely, everything is functional".

Neurologists often suspected the inconsistency between the manifestation of symptoms and the absence of diagnostic results by instrumental verification. One neurologist described how it was time and energy consuming to deal with people with this type of disorder and perform some exams when he "already knows) they will show nothing."

In the context of important workload, this perception led HPs to complain to colleagues, referring to these patients with judgmental and stigmatizing words such as "crazy," "simulant," and "waste of time."

For neurologists, the absence of an organic basis was a source of the disorder's delegitimization. This was accompanied by the idea that the lack of an organic basis meant that they were not their kind of patients.

Among psychiatrists, the tendency to reduce the disorders' etiopathogenesis to the domain of the mind was common. Often, psychiatrists defined the condition with terms borrowed from the DSM or traditional psychological literature: personality disorders, somatoform dis-orders, somatization, and hysteria. At the same time, these explanations were often given with a doubt that something organic might exist.

[Physiotherapists], too, felt frustrated in not knowing for sure what to do about FNDs and more specifically of "having to move a body" with the suspicion that the problem was not there but, instead, in mind.

How can physiotherapy create the motivation to move in a person who does not want to move? We are used to patients who want to move but cannot because of an injury; something is wrong! Instead, in these cases ... we don't have techniques; I mean we don't have experience with this ... the first feeling is always that it's not our job.

I always use expressions like inside of us there is the lived experience, there is a suffering, life is difficult for everyone, we have conflicts, we fight, we are not well, and this generates negative energies that to some extent we have to control, let out and then afterward generally there are those who channel them […] on the digestive tract […] some people have headaches, some people here, some people there … it could be that this negative energy, this discomfort, manifests itself through the appearance of tremor, whatever it is.

Our therapy has a different efficacy […] we didn’t think rehabilitation had anything to do with these dysfunctions. We always thought that it’s not our cases, instead […] the patient feels somehow … taken care of. He is not denied his problem; he is recognized and treated in some way […] I don’t know if it can be a deception for the patient … anyway, he believes that his functioning is determined by something organic.

 

[SNT Gatchaman]

Selected quotes from discussion —

In trying to word the disorder, the FND label was perceived as ambiguous and subject to individual interpretations. The diagnosis usually left the patients with a sense of incomprehension, surprise, and incredulity: many found it hard to believe or accept that “they could do this to themselves.” The common suggestion of psychological care or psychotherapy was encountered with suspicion or shame by most, who often entertained (preferred) different (organic) explanations.

Neurologists diagnosed FNDs based on the absence of organic abnormalities, which aligned with the context of neurology and their disciplinary framework. Additionally, investigating “stressful factors” in patients’ life histories often reinforced the diagnosis, predominantly viewed as psychogenic.

... 56% of participants defined FND as primarily a psychiatric or psychological problem. Often, the neurologists were frustrated by dealing with a problem they defined negatively: FNDs were what people had when “nothing was there” and something that was “not their problem.”

Our analysis generated an interpretation of perceiving FNDs from a dichotomous perspective, marked by reductionist views and a singular emphasis on either the body or the mind. This tendency has significant implications for the experiences of all parties involved and the care pathway. A dualistic perspective that separates the mind and body in illness perception leads to the belief that symptoms are either solely psychological (psychogenic) or purely physical (neurogenic, organic, somatic, etc.). Despite more recent biopsychosocial explanations for the etiology of FNDs, the prevailing understanding of an FND diagnosis continues to be influenced by a dualistic framework. This contributes to a fragmented approach to disease management and overall dissatisfaction among all actors involved.

Careful communication is required to help patients understand and process an FND diagnosis: the terminology and communicative mode used can influence the understanding and attitude of the patients in managing their symptoms. Some terms can be interpreted in a misleading or dysfunctional way by the patient. For example, using words such as psychogenic, psychosomatic, and somatization suggests the problem is psychological. Other expressions, such as non-organic, non-epileptic, or not explainable on a medical basis, imply that the symptoms’ cause is unknown.

 

[bobbler]

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?

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’

 

[rvallee]

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.

 

[bobbler]

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?

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?

 

[bobbler]

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.

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

 

[JemPD]

Care requires a multidisciplinary approach, which, to date, has yet to be considered.

eh? 'yet to be considered'?

its all that seems to get considered!

 

[boolybooly]

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?

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

 

[rvallee]

eh? 'yet to be considered'?

its all that seems to get considered!

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.

 

[wabi-sabi]

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?

 

[Wonko]

Not if they change what words mean.

 

[wabi-sabi]

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.

 

[wabi-sabi]

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.

 

[Sean]

The current approach to psychosomatic medicine is, obviously, already biopsychosocial so this is just bizarre....

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.

Yep. It is why they have to keep coming up with new labels, and endlessly repeat claims about them being new insights and understandings. It is the same crap as when I first started learning about the science of ME/CFS (or lack of it) over 35 years ago.

It is now understood that FNDs’ development involves complex interactions between biological, psychological, and social factors.​

So certain. I bet that eventually it will come full circle and end up at it being clearly a primary biological disorder. Never mind the cruelly wasted patients' lives in the intervening decades. Small price to pay for the glorious careers of the FND 'experts'.

When patients were diagnosed with an FND, many were shocked and had difficulty accepting it. The explanation given often emphasized psychological or psychosomatic factors,​

I wonder whose fault that is?

I always use expressions like inside of us there is the lived experience, there is a suffering, life is difficult for everyone, we have conflicts, we fight, we are not well, and this generates negative energies that to some extent we have to control, let out and then afterward generally there are those who channel them […] on the digestive tract […] some people have headaches, some people here, some people there … it could be that this negative energy, this discomfort, manifests itself through the appearance of tremor, whatever it is.​

Did you ever consider simply saying: We don't know what the problem is, nor how to deal with it.

That thought never ever crossed your minds? And still hasn't?

Careful communication is required to help patients understand and process an FND diagnosis: the terminology and communicative mode used can influence the understanding and attitude of the patients in managing their symptoms.​

'We need to learn how to lie better to patients.'

Other expressions, such as non-organic, non-epileptic, or not explainable on a medical basis, imply that the symptoms’ cause is unknown.​

Yes, God forbid you should tell patients the truth, that you don't actually know what is causing their symptoms, nor what to do about it.

Above all else, make damn sure that admission is never made. People might stop thinking you actually are experts.

 

[boolybooly]

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.