Review Understanding Functional Neurological Disorder: Recent Insights and Diagnostic Challenges, 2024, Mavroudis et al.

SNT Gatchaman

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Understanding Functional Neurological Disorder: Recent Insights and Diagnostic Challenges
Mavroudis, Ioannis; Kazis, Dimitrios; Kamal, Fatima Zahra; Gurzu, Irina-Luciana; Ciobica, Alin; Pădurariu, Manuela; Novac, Bogdan; Iordache, Alin

Functional neurological disorder (FND), formerly called conversion disorder, is a condition characterized by neurological symptoms that lack an identifiable organic purpose. These signs, which can consist of motor, sensory, or cognitive disturbances, are not deliberately produced and often vary in severity. Its diagnosis is predicated on clinical evaluation and the exclusion of other medical or psychiatric situations. Its treatment typically involves a multidisciplinary technique addressing each of the neurological symptoms and underlying psychological factors via a mixture of medical management, psychotherapy, and supportive interventions.

Recent advances in neuroimaging and a deeper exploration of its epidemiology, pathophysiology, and clinical presentation have shed new light on this disorder.

This paper synthesizes the current knowledge on FND, focusing on its epidemiology and underlying mechanisms, neuroimaging insights, and the differentiation of FND from feigning or malingering. This review highlights the phenotypic heterogeneity of FND and the diagnostic challenges it presents. It also discusses the significant role of neuroimaging in unraveling the complex neural underpinnings of FND and its potential in predicting treatment response.

This paper underscores the importance of a nuanced understanding of FND in informing clinical practice and guiding future research. With advancements in neuroimaging techniques and growing recognition of the disorder’s multifaceted nature, the paper suggests a promising trajectory toward more effective, personalized treatment strategies and a better overall understanding of the disorder.

Link | PDF (International Journal of Molecular Sciences) [Open Access]
 
A "good" review article. @dave30th FYI overview.

And for pwFND who wonder why we have a clear interest in this condition —

FND is often associated with pre-existing psychiatric disorders (like depression, anxiety, and personality disorders), other somatic conditions (such as pain and fatigue), and functional somatic disorders like irritable bowel syndrome. Neurological illnesses and physical injuries are also common precursors. Additionally, FND has been linked with lower socioeconomic status.
 
Additionally, FND has been linked with lower socioeconomic status.

The increasing prevalence of FND, recognized as the second most common outpatient neurological diagnosis, underscores the urgency for a deeper understanding of this disorder [3,5].
Recent studies have revealed varying rates of prevalence and incidence for functional neurological disorder (FND) across different populations, underscoring the significant burden and diversity in its distribution.
I think that the prevalence of FND in a group is inversely related to the status of that group, with status affecting the quality of the doctor you see, and the willingness of that doctor to look carefully for another cause.

FND is estimated to comprise at least 5% to 10% of new neurological consultations, ranking as the second most common reason for visiting a neurologist after headache.
I don't think that's right. How many people go to the neurologist thinking 'the reason I am visiting this neurologist is to get a diagnosis of the condition formerly known as hysteria'? No, people go to the neurologist to find an answer for their pain or fatigue or tics or some other specific problem.
 
Personality traits have long been associated with functional motor disorders, often linked to the concept of a hysterical or histrionic personality. Studies focusing on personality disorders, especially cluster B disorders, found them to be more common in FND but still only present as a minority. The reported frequencies vary widely [32,46,47]. Stone et al., in a prospective case–control study, found small to medium effect sizes for higher neuroticism and lower openness in FND, correlating with higher frequencies of depression and anxiety in these patients [33]. Previous studies on personality traits in FND have shown mixed results, indicating no consistently found personality traits in these patients compared to control subjects [48,49].
Medical and surgical comorbidities present a clearer pattern in FND. Higher rates of surgical procedures and a history of neurological and other disease diagnoses have been recognized as important risk factors. The high rate of sterilization, particularly compared to gender-matched controls, might suggest a greater willingness to undergo surgical procedures in FND patients [34,50,51,52,53,54,55,56,57]. Despite these patterns, the concept of symptom modeling in the environment as an etiological factor for FND, going back to Janet’s idée fixe, remains a challenging and arguably unfalsifiable hypothesis. Studies exploring disease modeling have not found it to be a diagnostic feature of FND, nor have they conclusively demonstrated its etiological significance [58,59].
Stressful events at work can generate a psychological tension that, associated with traumatic experiences, contributes to the appearance or worsening of FND symptoms in susceptible employees [18]. Vanini G et al. [60] illustrated that this cluster of symptoms is frequent in health workers who work in a high-stress, conflictual environment with multiple tasks and tight deadlines. Reciprocal understanding and support in the workplace from both employers and employees are essential to effectively manage these challenges and find solutions that allow workers with FND to manage their symptoms and be fulfilled in their work [60].
While FND has been historically linked to various predisposing factors, including adverse childhood experiences and certain personality traits, the overall picture emerging from recent studies is that these factors, while significant, do not present in the majority of patients. The etiology of FND appears to be multifactorial, with no single predisposing factor universally present in all cases.

I probably won't read further than this. But, these papers are truly amazing. Turns out personality traits and adverse childhood experiences can't explain FND, despite heroic efforts on the part of decades of investigators to make it so.
So, what is correlated?
- medical and surgical co-morbidities. And, what do the authors take from that finding? That these FND patients like undergoing surgical procedures, especially sterilisation. So, nothing to do with those co-morbidities, or, heaven forbid, some damage associated with the surgery
and
- being a health worker in something like an ED. And, what do the authors take from that finding? That it's the stress of the environment - nothing to do with the constant exposure to disease, and the physical effects of shift work and long hours.
 
It never ceases to amaze seeing a powerful modern pseudoscience so late in technological development. And scrambling to explain how every assumption they made turned out to be wrong, all they can think of at this point is to take the consequences of illnesses they don't understand and reattribute them as their cause, the future affecting the past because reasons. It has the same troubling effect as a large astrology department at NASA would. Something unthinkable, because space sciences are serious business where outcomes always matter.

And showing just how thoroughly confused medicine as a whole is over symptoms, what they cannot explain because it's not simple enough to be put into a diagram. Hell, it's even more complex than metabolic cycles and they can handle those. What they can't handle is the limits of their knowledge. That there is a limit to it, one that shouldn't allow them to invoke magical explanations. And yet they sure do.

That's a bit funny:
These signs, which can consist of motor, sensory, or cognitive disturbances, are not deliberately produced
They are not magically produced either. Or spiritually. Or cosmically. Or linearly. Or electronically. Or whatever. But of course the underlying belief system has always been grounded in the belief over feigning that they're still hooked to it. As if it even makes sense to speak of deliberately producing symptoms, when the only thing that may make sense would be to falsely report so, but even then it makes little sense anyway.

It's truly a modern version of "there be dragons" on maps. There is no such thing, but generations of being convinced of it are very hard to root out of a culture that is immune to factors outside itself and is protected by a self-defeating power imbalance that encourages hubris and, ultimately, failure.
While FND has been historically linked to various predisposing factors, including adverse childhood experiences and certain personality traits, the overall picture emerging from recent studies is that these factors, while significant, do not present in the majority of patients. The etiology of FND appears to be multifactorial, with no single predisposing factor universally present in all cases.
I can never not think of this Simpsons joke when I read the nonsense these people put out. Just zero effort put into their work, the very picture of a lazy student who did their homework on the way to class.

_F2aAVSwplQhCJ_nLvKPiSkNlVRMbsk3_DrEDqdXK2w.jpg
 
There's also this that bothers me, the navel-gazing:
health workers who work in a high-stress, conflictual environment with multiple tasks and tight deadlines
As if health care is the only work environment like this. But of course it is their work environment, and so the only one they can think of that is like this. Just pure uncut freebased hubris.
 
FND is estimated to comprise at least 5% to 10% of new neurological consultations, ranking as the second most common reason for visiting a neurologist after headache.

I don't think that's right. How many people go to the neurologist thinking 'the reason I am visiting this neurologist is to get a diagnosis of the condition formerly known as hysteria'? No, people go to the neurologist to find an answer for their pain or fatigue or tics or some other specific problem.

Yes. Perhaps this might be more accurately worded as "FND is estimated to be the diagnosis given in 5-10% of new neurological consultations, ranking it as the second most common diagnosis after primary (chronic daily) headache."
 
Yes. Perhaps this might be more accurately worded as "FND is estimated to be the diagnosis given in 5-10% of new neurological consultations, ranking it as the second most common diagnosis after primary (chronic daily) headache."
It might be, if that is what they meant to say. I don't know. But, if that is true, that the two most common diagnoses are essentially a description of a symptom and no well-founded identification of the cause of the symptom, then neurology doesn't seem to be doing a great job.
 
Yes. Perhaps this might be more accurately worded as "FND is estimated to be the diagnosis given in 5-10% of new neurological consultations, ranking it as the second most common diagnosis after primary (chronic daily) headache."

Some of the intro text reads like it's literally swiped from papers from the UK and US experts. And the second-most-common claims is of course complete bullshit. That's the lie perpetrated by the FND lobby based on misinterpreting a 2010 study, which found 5.5% were diagnosed with conversion disorder-type symptoms. They tripled the prevalence by adding in another whole group with "psychological" diagnoses. And conversion disorder diagnoses are themselves hard to believe. This claim that it's a common and prevalent condition is based only on their lumping together everyone whose symptoms do not have an identifable cauae.
 
I probably won't read further than this. But, these papers are truly amazing. Turns out personality traits and adverse childhood experiences can't explain FND, despite heroic efforts on the part of decades of investigators to make it so.
So, what is correlated?
- medical and surgical co-morbidities. And, what do the authors take from that finding? That these FND patients like undergoing surgical procedures, especially sterilisation. So, nothing to do with those co-morbidities, or, heaven forbid, some damage associated with the surgery
and
- being a health worker in something like an ED. And, what do the authors take from that finding? That it's the stress of the environment - nothing to do with the constant exposure to disease, and the physical effects of shift work and long hours.

I'm currently looking up the range of papers that got listed after the sterilisation suggestion (it alarmed me so much - and made me think of it being like when lots of people with ME got diagnosed with depression first it got claimed by some that indicated that was a common comorbidity rather than indicative of culture and misdiagnosis ie were people sterilising people as 'a fix' back in the day).

I'm quite surprised that of this list quite a few are papers of things like people with Parkinsons and Lewy body dementia.

But I'm already shocked and I've only got to the first paper in this list of 7 9 papers here: "Medical and surgical comorbidities present a clearer pattern in FND. Higher rates of surgical procedures and a history of neurological and other disease diagnoses have been recognized as important risk factors. The high rate of sterilization, particularly compared to gender-matched controls, might suggest a greater willingness to undergo surgical procedures in FND patients [34,50,51,52,53,54,55,56,57]. "

This first one is from 1997 (!) and is from a London Neuro dept: Slater revisited: 6 year follow up study of patients with medically unexplained motor symptoms | The BMJ

The authors include Anthony David, although he isn't the lead author (Crimlisk et al)

The abstract 'conclusion' was as follows: "Unlike Slater's study of 1965, a low incidence of physical or psychiatric diagnoses which explained these patients' symptoms or disability was found. However, a high level of psychiatric comorbidity existed."

and the key messages in the abstract:
Key messages
  • Motor symptoms that remain unexplained medically despite thorough investigation are a common clinical problem, but the emergence of a subsequent organic explanation for these symptoms is rare

  • The prevalence of coexistent affective and anxiety disorders is high and many patients also have a personality disorder

  • Patients with a shorter duration of symptoms and coexistent anxiety or depression are likely to do better at follow up

  • Reinvestigation of these patients is both expensive and potentially dangerous and should be avoided where no clear clinical indication exists


But in the full article, In the results section it is noted that 31 of their sample had a history of organic neurological disorder: 15 with organic brain disease (inc migraine, epilepsy, parkinsons) and 16 with 'neurological diorder no brain disease' (inc 9 having previous disc surgery, 3 Peripheral nerve palsy, and then things like chiari malformation, myasthenia graivs, diabetic neuropathy). "The current unexplained symptoms were similar to those related to the previous neurological disorder in only 11 subjects (15%)."

It seems 3 of the 64 over the follow-up period were found to have alternative neuro diagnoses: myotonic dystrophy 4 years later, spinocerebellar degeneration 3 years after his admission (English not being his first language was the 'communication issue'), and paroxysmal hemidystonia. Two of these ended up with breathing and swallowing issues etc so pretty severe stuff and I don't know if those conditions these days would be any less likely to be misdiagnosed into FND or such deterioration could be prevented in the eventually diagnosed condition by earlier treatment?

This is from the discussion

The incidence of subsequent neurological disorder in our study—indicative of initial misdiagnosis—was low. There was also little evidence that symptoms reflected new presentations of an undiagnosed psychiatric disorder. Mitigating factors explain misdiagnosis. In one subject, the diagnosis may have been missed because paroxysmal dystonias have only recently been recognised as a neurological entity.14 In two others, communication problems may have played a part. It is impossible to assert that the symptoms of the other subjects will never be explained by neurological diagnoses, but after 6 years of follow up this is increasingly unlikely. The high diagnostic accuracy probably reflects improved diagnostic skills as well as better non-invasive investigative techniques.

Hmm mitigating factors for where they didn't pick up another neurological diagnosis - if communication problems may have played a part in two of these, wouldn't it be relevant to flag 'the issue of communication problems' rather than just list it as a mitigating factor, it seems a bit insightful of attitude?

The equal sex ratio in our cohort, different from the female preponderance of previous studies, remains unexplained. However, the high incidence of affective, anxiety, somatisation, and personality disorders is similar to that previously reported.1517 Although five subjects had died by the time of follow up, their deaths did not reflect missed neurological diagnoses. It is important to remember that conversion disorder does not protect patients from developing serious physical illness. The presence of somatisation in other systems may have lead to delay in the diagnosis of severe non-neurological illnesses in two subjects. In a further two subjects who died at a young age, death may have been related to the sequelae of underlying psychiatric disorder.

5 subjects died by the time of follow-up but they didn't reflect missed neuro diagnoses. Is that good enough? and more importantly did their FND diagnosis or management play a part in anything missed or whether their death had been avoidable?

This, in 1997, explicitly notes that even if the diagnosis was correct it doesn't 'protect' people from developing serious physical illness. SO how have we got to the point now where it can mean people aren't being investigated?

Few studies have looked at indicators of prognosis. Our results support previous work which found that a short duration of symptoms was associated with a good outcome. 7 8 19 Pending litigation—as is often suggested anecdotally—also emerged as an indicator of poor prognosis. Changed marital status (in either direction) seemed to predict a good outcome, presumably reflecting a favourable change in personal circumstances.

The association between comorbid psychiatric disorder and good outcome underlines the importance of screening for affective and anxiety disorders in these patients. These disorders may make some people vulnerable to developing conversion symptoms, which if managed inappropriately may lead to enduring disability. The findings suggest that treatments may need to be targeted specifically. Treating depression and anxiety aggressively and exploring relevant personal circumstances may reduce disability in some patients, while for those with several physical symptoms and personality disorder, prevention of iatrogenic damage and cost effective management strategies aimed at damage limitation may be more appropriate.

The changed marital status and then concluding it must be 'reflecting a favourable change in personal circumstances' seems gobsmacking of the level of scientific thinking - cart before horse much? It is pretty tricky to complete a divorce (and all the other complications) if you are getting more and more ill, and I imagine that unless you are already in a very long-term relationship then going from dating to marriage becomes harder the iller you are?

they've associated comorbid psychiatric disorder with good outcome so hence suggested where that is present to treat those aggressively. Whereas almost leading on as a non-sequitur they've then said 'while for those with several physical symptoms and personality disorder' (I'm hoping they didn't mean it to read as it does) 'prevention of iatrogenic damage - what are they hinting at with that? - and 'cost effective management strategies aimed at damage limitation' doesn't sound particularly great? I'd like to know more about what they mean by 'damage limitation' and these strategies are?

This is the bit that is interesting:

Referral bias may explain the high social class, older age, and chronicity of our cohort compared with other studies. 6 19 Similarly, the extent to which organic disorders were excluded by special investigation may not be typical of that in other centres.
 
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and the second reference from this batch seems to be to me another 'funny little one' that could indicate a divisive agenda, and includes Stone, Carson and Sharpe on its list of authors: Which neurological diseases are most likely to be associated with "symptoms unexplained by organic disease" - PubMed (nih.gov)

This is the abstract (my bolding):

Many patients with a diagnosis of neurological disease, such as multiple sclerosis, have symptoms or disability that is considered to be in excess of what would be expected from that disease. We aimed to describe the overall and relative frequency of symptoms 'unexplained by organic disease' in patients attending general neurology clinics with a range of neurological disease diagnoses. Newly referred outpatients attending neurology clinics in all the NHS neurological centres in Scotland, UK were recruited over a period of 15 months. The assessing neurologists recorded their initial neurological diagnoses and also the degree to which they considered the patient's symptoms to be explained by organic disease. Patients completed self report scales for both physical and psychological symptoms. The frequency of symptoms unexplained by organic disease was determined for each category of neurological disease diagnoses. 3,781 patients participated (91% of those eligible). 2,467 patients had a diagnosis of a neurological disease (excluding headache disorders). 293 patients (12%) of these patients were rated as having symptoms only "somewhat" or "not at all" explained by that disease. These patients self-reported more physical and more psychological symptoms than those with more explained symptoms. No category of neurological disease was more likely than the others to be associated with such symptoms although patients with epilepsy had fewer. A substantial proportion of new outpatients with diagnoses of neurological disease also have symptoms regarded by the assessing neurologist as being unexplained by that disease; no single neurological disease category was more likely than others to be associated with this phenomenon.

So the entire aim of this study was for those who had a neurological disease to be investigated where their symptoms were considered 'to be in excess of what would be expected'?

I don't know much about neurology, but couldn't that also be something that could also have been approached by people who were specialists in each disease and used to 'inform the spectrum' too - are these really 'unexplained' or just poor souls who had a really bad time of it

So they were already back in 2012 looking at people with already diagnosed organic diseases to add on diagnoses of 'unexplained' to them?
 
and the second reference from this batch seems to be to me another 'funny little one' that could indicate a divisive agenda, and includes Stone, Carson and Sharpe on its list of authors: Which neurological diseases are most likely to be associated with "symptoms unexplained by organic disease" - PubMed (nih.gov)

This is the abstract (my bolding):



So the entire aim of this study was for those who had a neurological disease to be investigated where their symptoms were considered 'to be in excess of what would be expected'?

I don't know much about neurology, but couldn't that also be something that could also have been approached by people who were specialists in each disease and used to 'inform the spectrum' too - are these really 'unexplained' or just poor souls who had a really bad time of it

So they were already back in 2012 looking at people with already diagnosed organic diseases to add on diagnoses of 'unexplained' to them?

I couldn't help but notice that when looking at the abstract for this in the Journal of Neurology (couldn't find a full text) the following paper from 2019 was one of the ones highlighted underneath it as 'articles others are also reading':

The misdiagnosis of functional disorders as other neurological conditions | Journal of Neurology (springer.com)

also by Walzl, Carson, Stone

from the abstract:
Background
Several studies have shown that when patients with functional neurological disorders are followed up, it is rare to find another neurological condition that better explains the initial symptoms in hindsight. No study has examined the reverse, studying patients with a range of neurological disease diagnoses with the aim of assessing how often a new diagnosis of functional disorder better explains the original symptoms.

Seems quite an agenda ie something that from that 2012 paper has continued into this paper in 2019 looking specifically at those who already have diagnoses of organic neurological disorders. ..

I'll note the conclusion (my bolding):

Conclusions
Patients diagnosed with neurological disease sometimes have a functional diagnosis at follow-up which, with hindsight, better explains the original symptoms. This occurs at a frequency similar to the misdiagnosis of ‘organic’ neurological disease as functional disorder. Misdiagnosis can harm patients in either direction, especially as we enter an era of evidence-based treatment for functional neurological disorders.

Given the paper I've seen in the past saying things like diagnosing FND in someone who ended up having CJD was 'essential' did they mean to actually write 'misdiagnosis can harm patients in either direction'?

Because I think given the authors it is worth someone saving this as evidence of their acknowledgement here?
 
OK so reference 51 (from the list after the sterilisation being more common line) is: Cohort study on somatoform disorders in Parkinson disease and dementia with Lewy bodies | Neurology

in its abstract the conclusion is:
Conclusions: The frequency of somatoform disorder (SFMD) (with catatonic signs) in Parkinson disease and dementia with Lewy bodies suggests that SFMD are part of the spectrum of Lewy body diseases.

the methods (so you have a sense of what the research was, and who/which conditions) are:
Methods: SFMD were assessed by direct observation of symptoms in the year coincident (±6 months) with definite diagnosis of PD, DLB, Alzheimer disease, multiple system atrophy, progressive supranuclear palsy, or frontotemporal dementia, and by interviews with patients, caregivers, and general practitioners, and reviews of prior hospital admissions, in a cohort of 942 patients with neurodegenerative disorders. Matched groups of patients with PD and patients with DLB without vs with SFMD were selected for comparisons and followed up over 4 years.


So how did this paper demonstrate or underline/back up the second line of the following (for which it is listed as a reference inferring), or even the first for the article at the top of this thread?

Medical and surgical comorbidities present a clearer pattern in FND. Higher rates of surgical procedures and a history of neurological and other disease diagnoses have been recognized as important risk factors. The high rate of sterilization, particularly compared to gender-matched controls, might suggest a greater willingness to undergo surgical procedures in FND patients [34,50,51,52,53,54,55,56,57].


I have only got 3 papers in but not found one that talks of greater willingness to undergo surgical procedures or mention of sterilisation

am I missing something or are references supposed to actually back up what they are listed against in a paper?
 
reference 52 is a doozy that I can't see how it relates either, can't see mention of surgery or liking it or any sterilisation.

but has helped me to put a note on a few articles where the PHQ 15 was used as a measure of 'unexplained symptoms' (as this includes the usual suspects and concludes that these surveys are 'no better than chance' at identifying this, I thought that worth while).


The paper which includes Sharpe, Stone, Carson saying that the PHQ 15 doesn't identify people with unexplained symptoms better than chance I thought I'd do a quick google in case there were papers for which this reference might be relevant:

Somatic symptom count scores do not identify patients with symptoms unexplained by disease: a prospective cohort study of neurology outpatients - PubMed (nih.gov)

full text: untitled (researchgate.net)

abstract:

"Abstract
Objective:
Somatic symptoms unexplained by disease are common in all medical settings. The process of identifying such patients requires a clinical assessment often supported by clinical tests. Such assessments are time-consuming and expensive. Consequently the observation that such patients tend to report a greater number of symptom has led to the use of self-rated somatic symptom counts as a simpler and cheaper diagnostic aid and proxy measure for epidemiological surveys. However, despite their increasing popularity there is little evidence to support their validity.

Methods: We tested the score on a commonly used self-rated symptom questionnaire- the Patient Health Questionnaire (PHQ 15) (plus enhanced iterations including an additional 10 items on specific neurological symptoms and an additional 5 items on mental state) for diagnostic sensitivity and specificity against a medical assessment (with 18 months follow-up) in a prospective cohort study of 3781 newly attending patients at neurology clinics in Scotland, UK.

Results: We found 1144/3781 new outpatients had symptoms that were unexplained by disease. The patients with symptoms unexplained by disease reported higher symptoms count scores (PHQ 15: 5.6 (95% CI 5.4 to 5.8) vs 4.2 (4.1 to 4.4) p<0.0001). However, the PHQ15 performed little better than chance in its ability to identify patients with symptoms unexplained by disease. The findings with the enhanced scales were similar.

Conclusions: Self-rated symptom count scores should not be used to identify patients with symptoms unexplained by disease."
 
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reference 53 : Medical comorbidities in patients with psychogenic nonepileptic spells (PNES) referred for video-EEG monitoring - Epilepsy & Behavior (epilepsybehavior.com)

NB: no mention of surgery here, or liking it, or sterilisation.

I feel that they could have thought harder on the unfortunate acronym they have lumbered these patients with for a start. Not to be rude but given some things I've seen and the connection to at least sexism if not misogyny, and highlighting out female patients I think I'm right to be suspicious and note why on earth noone else has suggested it be an inappropriate 'stamp' to put on a patient set? Particularly given what they seem to be encouraging as demographics or claiming as likely history to 'watch out for'.

And is 'spells' even either the medical or commonly used term anyway that alternatives aren't more commonly used for?

This is from 2013 and worth reading through in case it is something unhelpfully misleading/influencing things that might be currently going on with some patients who are getting seizures - I don't know how influential this sort of thing is.

I've copied the shortened abstract, because I'm often suspicious of an ''epidemiologically-focused'' starter in an abstract that basically isn't really that, just a way to earmark out certain demographics or other conditions for 'consideration of this alternative diagnosis being more likely':

"Highlights
  • Patients with PNES are more likely to have fibromyalgia, chronic pain, and IBS.
  • Patients with PNES are more likely to have migraines, asthma, and GERD.
  • Having at least of one these disorders is sensitive and specific for PNES.
Abstract
Differentiating between psychogenic nonepileptic spells (PNES) and epileptic seizures without video-EEG monitoring is difficult. The presence of specific medical comorbidities may discriminate the two, helping physicians suspect PNES over epilepsy earlier. A retrospective analysis comparing the medical comorbidities of patients with PNES with those of patients with epilepsy was performed in 280 patients diagnosed with either PNES (N = 158, 74.7% females) or epilepsy (N = 122, 46.7% females) in the Epilepsy Monitoring Unit (EMU) of the University of Pittsburgh Medical Center over a two-year period.

Patients with PNES, compared to those with epilepsy, were mostly female, significantly more likely to have a history of abuse, had more functional somatic syndromes (fibromyalgia, chronic fatigue syndrome, chronic pain syndrome, tension headaches, and irritable bowel syndrome), and had more medical illnesses that are chronic with intermittent attacks (migraines, asthma, and GERD). The presence of at least of one these disorders may lead physicians to suspect PNES over epilepsy and expedite appropriate referral for video-EEG monitoring for diagnosis."
 
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reference 53 : Medical comorbidities in patients with psychogenic nonepileptic spells (PNES) referred for video-EEG monitoring - Epilepsy & Behavior (epilepsybehavior.com)

NB: no mention of surgery here, or liking it, or sterilisation.

I feel that they could have thought harder on the unfortunate acronym they have lumbered these patients with for a start. Not to be rude but given some things I've seen and the connection to at least sexism if not misogyny, and highlighting out female patients I think I'm right to be suspicious and note why on earth noone else has suggested it be an inappropriate 'stamp' to put on a patient set? is 'spells' either the medical or commonly used term anyway that alternatives aren't more commonly used for?

This is from 2013 and worth reading through in case it is something unhelpfully misleading/influencing things that might be currently going on with some patients who are getting seizures - I don't know how influential this sort of thing is.

I've copied the shortened abstract, because I'm often suspicious of an ''epidemiologically-focused'' starter in an abstract that basically isn't really that, just a way to earmark out certain demographics or other conditions for 'consideration of this alternative diagnosis being more likely':

"Highlights
  • Patients with PNES are more likely to have fibromyalgia, chronic pain, and IBS.
  • Patients with PNES are more likely to have migraines, asthma, and GERD.
  • Having at least of one these disorders is sensitive and specific for PNES.
Abstract
Differentiating between psychogenic nonepileptic spells (PNES) and epileptic seizures without video-EEG monitoring is difficult. The presence of specific medical comorbidities may discriminate the two, helping physicians suspect PNES over epilepsy earlier. A retrospective analysis comparing the medical comorbidities of patients with PNES with those of patients with epilepsy was performed in 280 patients diagnosed with either PNES (N = 158, 74.7% females) or epilepsy (N = 122, 46.7% females) in the Epilepsy Monitoring Unit (EMU) of the University of Pittsburgh Medical Center over a two-year period.

Patients with PNES, compared to those with epilepsy, were mostly female, significantly more likely to have a history of abuse, had more functional somatic syndromes (fibromyalgia, chronic fatigue syndrome, chronic pain syndrome, tension headaches, and irritable bowel syndrome), and had more medical illnesses that are chronic with intermittent attacks (migraines, asthma, and GERD). The presence of at least of one these disorders may lead physicians to suspect PNES over epilepsy and expedite appropriate referral for video-EEG monitoring for diagnosis."


Also a bit worrying that this one is from 2013 and notes it is difficult to discriminate these, yet there is a paper linked to from it that suggests the opposite (so people picking up said diagnosis then might have the impression it is 'foolproof') - which is it?: The problem of psychogenic symptoms: is the psychiatric community in denial? - Epilepsy & Behavior (epilepsybehavior.com)

Abstract
Psychogenic symptoms are common and pose an uncomfortable challenge. Among psychogenic symptoms, psychogenic nonepileptic seizures (PNES) are common and have been extensively studied. They are unique in that, unlike most other psychogenic symptoms, they can be diagnosed with near certainty. PNES can be used as a model, as almost everything that applies to PNES applies to other psychogenic symptoms. According to DSM-IV, somatic symptoms are the main manifestation of three groups of disorders: somatoform disorders, factitious disorder, and malingering. Treatment is challenging. Unfortunately, psychogenic symptoms tend to be neglected. For example, the American Psychiatric Association has abundant written patient education material available on diverse topics, but none on somatoform disorders. Psychogenic symptoms are also not the subject of much clinical research. A search of the journal Neurology for 1994–2003 for the word psychogenic in the title found 21 articles, only 4 of which on topics other than psychogenic seizures. A similar search for original articles in the New England Journal of Medicine found no articles with psychogenic in the title and two with psychogenic in the abstract. Thus, there seems to be a severe disconnect between the frequency of the problem and the amount of attention devoted to it.
 
Reference 54: CRPS_FND_manuscript_150818.pdf (dundee.ac.uk)

Maybe this is the one that mentions 'surgery' because they do say in their introduction: "Complex regional pain syndrome (CRPS) is a disabling chronic pain condition that may follow physical injury to a limb, either through surgery or trauma."

Popkirov et al (2019) includes both Carson and Stone

"Complex regional pain syndrome and functional neurological disorders – time for reconciliation
Abstract
There have been many articles highlighting differences and similarities between complex regional pain syndrome (CRPS) and functional neurological disorders (FND) but until now the discussions have often been adversarial with an erroneous focus on malingering and a view of FND as ‘all in the mind’. However, understanding of the nature, frequency and treatment of FND has changed dramatically in the last 10–15 years. FND is no longer assumed to be only the result of ‘conversion’ of psychological conflict but is understood as a complex interplay between physiological stimulus, expectation, learning and attention mediated through a Bayesian framework, with biopsychosocial predisposing, triggering and perpetuating inputs. Building on this new ‘whole brain’ perspective of FND, we reframe the debate about the ‘psychological versus physical’ basis of CRPS. We recognise how CRPS research may inform mechanistic understanding of FND and conversely, how advances in FND, especially treatment, have implications for improving understanding and management of CRPS."


Well it seems the Popkirov paper includes the following in its full text:

"In the debate surrounding CRPS one conceptual schism stands out as particularly polarizing and counterproductive: the role of psychological processes.[4,5] This debate has typically been characterised over the years as a discussion between those who see CRPS as a genuine medical disorder, and those who seek to define it as a ‘non-organic’ or ‘psychogenic’ disorder. Indeed it was classified as hysteria minor by the so-called 'father of neurology' Jean-Martin Charcot in 1892.[4,6] Within the umbrella of ‘non-organic’ there has often been little distinction between patients with a genuinely experienced functional neurological disorder (FND; also called psychogenic or conversion disorder) and those patients wilfully exaggerating symptoms for medical care or financial gain.[7,8] Voluntary feigning of CRPS signs and symptoms is rarely found in cases of malingering or factitious disorder[9-11] and must not be equated with FND."


BUT HOw do these claims about Complex Regional Pain Syndrome marry up with the findings of a genetic cause for it on the following thread: Evidence of a genetic background predisposing to complex regional pain syndrome type 1, 2023, Shaikh et al | Science for ME (s4me.info)

"Conclusion
A single SNP in each of the genes ANO10, P2RX7, PRKAG1 and SLC12A9 was associated with developing chronic CRPS-1, with more males than females expressing these rare alleles. Our work suggests the possibility that a permissive genetic background is an important factor in the development of CRPS-1."


So why is this 2024 paper including this Popkirov paper on CRPS and NOT the Shaikh et al (2023) paper?

I know why, because they've read the 'FND' and anything that backs it up stuff, but not the latest updates on any of these conditions that makes the papers and suggested links questionable?
 
Reference 55 relates to Cauda Equina Syndrome - in particular scan-negative vs scan-positive (MRI):
The clinical features and outcome of scan-negative and scan-positive cases in suspected cauda equina syndrome: a retrospective study of 276 patients | Journal of Neurology (springer.com)

It again includes in its authors Stone and Carson and is from 2018 (Hoeritzauer et al, 2018)

The conclusion is as follows:
Conclusions
The data support a model in which scan-negative cauda equina syndrome arises as an end pathway of acute pain, sometimes with partly structural findings and vulnerability to functional disorders.


As this one is beyond my knowledge but there may be those who are more able to look into this one and understand it and see through any issues I'm keeping this short.

I note that perhaps this one might relate to the sentence it actually references re: surgery being more common, but I don't think so given the context is just follow-up on those who present with CES and get a scan that is either positive or negative and are followed up 16months later.
 
It might be, if that is what they meant to say. I don't know. But, if that is true, that the two most common diagnoses are essentially a description of a symptom and no well-founded identification of the cause of the symptom, then neurology doesn't seem to be doing a great job.

I've taken a pause before looking properly at the last two papers. But, as you've mentioned it, one is on headache and the other migraine (Migraine associated with conversion disorder (Babinski's migraine). Analysis of a series of 43 cases - ScienceDirect )

The headache one: Functional/Psychogenic Neurological Symptoms and Headache (rwevansmd.com)
has a big old spiel bit about whether it is functional and the reasons why physicians mightn't be keen on seeing their headache patients that way

"What If Functional Neurological Symptoms Were Considered As Legitimate As Migraine?—For both these cases, the problem may lie in the fact that many neurologists have difficulty taking seriously or believing patients with functional weakness and dissociative attacks. There is still widespread support among neurologists for the idea that deception is playing a part in these symptoms even if they do not think it is the whole story.10 Certainly, 64% of the respondents of our survey agreed that these patients often deliberately exaggerate their symptoms (see Appendix I). This may be in large part because of the way that functional motor symptoms in particular can be shown at the bedside to be inconsistent (whereas there is no similar test for headache). No wonder, then, that headache specialists do not want “honest” headache patients to be associated with “dishonest” functional/psychogenic patients. Only 9% of headache specialists thought that patients with headaches exaggerate. But imagine how much more interesting the debate would be, if both types of symptoms could be taken equally seriously. In that scenario we could ask much more interesting questions not only about the biology of functional neurological symptoms but about the psychology of headache."
 
I think that the prevalence of FND in a group is inversely related to the status of that group, with status affecting the quality of the doctor you see, and the willingness of that doctor to look carefully for another cause.


I don't think that's right. How many people go to the neurologist thinking 'the reason I am visiting this neurologist is to get a diagnosis of the condition formerly known as hysteria'? No, people go to the neurologist to find an answer for their pain or fatigue or tics or some other specific problem.

I'm getting quite disturbed going through this. Appreciate anyone else who wants to pick away at this too, as there is a certain amount of short bursts needed because of how shocking it is when I realise how many areas they have 'gone at' over the years to create some add-on. Some of these are pretty chilling when you think about the ambition / agenda behind it?

I'm also coming to the realisation that whilst it is a whole new territory to cover meaning expansive work it really isn't 'different territory' because of what its aims are - creating territory from it seems looking into already known organic diseases and seeking to find or claim 'bits of that' or 'patients who have' functional chunks from those.


I agree on your point about status - then in relation to your first line there is the question about 'consent' (and therefore ethics) if something turns out to be retrospective and maybe the individual was unaware they were being investigated for such etc. So much of the stuff in this particular area seems to be retrospectives from potentially selective samples that it almost when reading one after the other kids you into thinking this is some sort of methodological OK or norm.

I think what I have spotted (when you compare eg the 1997 one which appears to be a lauded neurology centre but notes it has a 'different demographic' to normally found ie less 'lowly/vulnerable' patients perhaps but more 'status' in the staff themselves?) is that it seems to be more about power-differential

SO status but at its heart vulnerability of patients, and there certainly seem to be common themes in which clinics are being used as cohorts because the researchers 'have access' are then being perhaps used to define the epidemiology?

I can't help but notice that most of these papers I have looked at are from the UK (one is Spanish?) so reliant on the pretty strange vs world norms set-up of the NHS

and how there aren't US references for example.

And how access to healthcare is pretty different there. As would be the power differential in the interaction potentially

Of course the first and second authors listed for this paper appear to be from Leeds, UK but then there are countries like Greece, Morocco and Romania

there are 173 references listed (although I can already note from the small selection there appear to be common names in quite a few of these, so I don't know how few actual cohorts this covers - it might be very small indeed by comparison if it is mainly from a few clinics/areas doing a lot of papers) so going through to see how representative this is of the international perspective isn't a small task.
 
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