Why functional neurological disorder is not feigning or malingering 2023 Edwards, Yogarajah and Stone

Abstract

Functional neurological disorder (FND) is one of the commonest reasons that people seek help from a neurologist and is for many people a lifelong cause of disability and impaired quality of life. Although the evidence base regarding FND pathophysiology, treatment and service development has grown substantially in recent years, a persistent ambivalence remains amongst health professionals and others as to the veracity of symptom reporting in those with FND and whether the symptoms are not, in the end, just the same as feigned symptoms or malingering.

Here, we provide our perspective on the range of evidence available, which in our view provides a clear separation between FND and feigning and malingering. We hope this will provide a further important step forward in the clinical and academic approach to people with FND, leading to improved attitudes, knowledge, treatments, care pathways and outcomes.

Paywall, https://www.nature.com/articles/s41582-022-00765-z

 

My biggest issues with any diagnosis of FND are :

1) If I am diagnosed with FND as a result of a pain in my abdomen (for example), then if I later develop a pain in one of my legs or my right lung or my pancreas they will automatically be assumed to be part of my "FND" diagnosis with much less investigation or proof than would be the case if I wasn't diagnosed with FND.

2) If the pain in my abdomen that triggered the diagnosis of FND is eventually correctly diagnosed as a physical problem and is properly treated, the diagnosis of FND will not disappear and the pain in my leg / lung /pancreas will not be revisited. The FND diagnosis will follow me around and be the elephant in the room in every consultation with a doctor / nurse / surgeon until the day I die.

 

I think this is one of their ruses for buying the trust of patients.

It seems outwardly to be a step forward and desperate people think that they are finally being listened to. They don't see the bigger picture or even know at the time there is a bigger picture.

It traps them.

People with this DX sometimes don't want to listen to other patients experience because they are clinging to these crumbs.

I am seeing this on the Facebook groups for ME POTS and now LC.

 

Doesn’t this sound creepily familiar straw man sales pitch (honest sir we aren’t the gaslighters ) to the ‘used to be called yuppie flu’ bla BPS used to claim they were the enlightened improvement on.


Which is why for the last few decades no person with ME knows whether the person talking to them are deluded but thinks they are enlightened’because it’s real it’s just helped by exercise and fatigue’. It would have been far far less awful if this dishonesty hadn’t been ‘built in’ by this switch and bait

 

The crocodile smile (as I think of it) of someone who tells a spouse or relative or employer ‘they can do something to recover them’ and adjusts all the narrative to make it seem like it’s those saying they don’t know for sure yet who might be the bad guys etc

 

In my personal view, it's immoral to do research with poor methodology because of opportunity costs. The same funds, equipment, and labor could have been used on research with greater potential to prevent or relieve human suffering.

 

Oh, I would frame that quote. Nice.

 

Spot on. And I think most non-medics at least know this is 'the very point/purpose' of said buckets too.

I also think this stuff has much bigger implied implications than it just being about FND. It to me seems to be selling 'psychosomatic illness is real'. And the usual writing between the lines of 'certain patients' aren't to be taken too literally (we'll just be better in our 'attitude' towards them). So I would think such stuff has bearings exactly on that.

Sounds to me a heck of a lot more like they are describing a coded message of a construct/bigotry 'in the mind of medics' towards certain people. 'we don't call them malingerers anymore'. The abstract doesn't seem to provide any other answer to the 'why' other than this and saying their service provision for 'this segment' has grown, when otherwise you'd think actual facts about the disease and pathophysiology would answer this.

I have a scary feeling they think these are the 'facts and pathophysiology' thanks to a lump and dump approach then using 'epidemiology' which focuses on 'others opinion of them' being what these people have in common vs biomed investigations.

 

I feel like we need research being done to flag certain tropes in literature, that is like the Bechdel test - a scale like the one for Hollywood films being sexist: https://en.wikipedia.org/wiki/Bechdel_test

Or something that can keep count of where/how much tropes (or newer incarnations) are used e.g. for 'psychosomatic is real', suggesting personalities or cliches about patients in layterms rather than medical symptoms, and using the not-hidden-at-all 'we're just saying everyone else thinks this not suggesting others should' as gadgets to say what they can't say outright anymore. Or to give instruction it 'is a rebrand' because 'we don't use that term for them now'.

It would stop people trying to play the game of 'reading into it' if you summarise what is being read (doesn't matter what is being said does it)


Knowing only the abstract would be seen by most, it reads to me like this has been used as a vehicle for basically an advert saying:

1. Why Functional Neurological Disorder (so you know what FND stands for) is not feigning or malingering

2. it is 'now very common' by claiming prevalence stats that aren't correct, so medics should see it as a horse instead of the zebra when thinking differential diagnoses and 'expect to see it'

3. Watch out for it in 'those with long-term disability and an impaired quality of life' as it is the only symptom/description mentioned

4. 'it has grown substantially over the years' (and not noting from what to where and its quality), albeit throwing it in alongside service development (which probably has grown) and treatment, we've now a bigger evidence-base 'to call it a thing'. Yet not answering the 'why it is something other than feigning or malingering' here but instead:

5. Invoking the 'ad populus' fallacy 'medical professionals and others tend to question the veracity of symptoms' (yes, most others think this too). Then deliberately repeated the very sentence and exact same words of 'feigning and malingering', which can only be to underline that point, as the last two lines. Even 'funnier' is their linguistic tool of separating the 'not' from 'feigned symptoms and malingering' by inserting the clause 'in the end'. Which makes it highly likely to be misread [without the not].

I say last two lines because after that is the 'this paper will' but due to paywall few can read it, of those who can fewer will. And the first of its 'aims' is to improve attitudes to which one might say they've already thoroughly 'given the gist of'.

From a title + 4 sentence abstract, let's say 5 lines in total, somehow the whole thing is just 3 line/sentences saying/repeating 'medical professionals think this is feigning or malingering' sandwiched between 2 others which say very little. One of those lines says it twice.

That's their description of the condition.



I can't help reading this as if you were more directly marketing and took out just some of the veiling to get the action points across more clearly it might read something like:


"FND, 'functional neurological disorder', why it is 'real' rather than 'feigning or malingering'

it is now one of the most common reasons people go to Neurology

these are people who claim they have long-term/chronic disability or impairment

Although we've/it's substantially grown over the years ... medical professionals and others still have 'stubborn ongoing mixed feelings/contradiction' about how true and accurate symptom reporting is in 'those with FND'.

and whether the symptoms are not, in the end, just the same as feigned symptoms or malingering

Our view provides a clear separation [for you] of 'Functional' from 'malingerering or feigned symptoms'.

In the past many medics called these people malingerers or thought symptoms were feigned. Pay £20 if you want to read detail on our perspective which we think is a step forward providing 'better attitudes', treatment etc [for these people]. "

 

A loy of these so called proffessionals have devoted their entire career to this schmozzle. So its in their interest to make it important but in reality they are passing the buck to pychs because they have no idea. FND is just a construct without any known pathysology so they make up the symptoms and tests without ever being rigourous and with their own biases.

 

Another factor is that when the NHS is finally killed off (it's currently in its death throes) and patients in the UK have to pay for any and every contact with the health service, people with problems classified as mental health issues will struggle to get any social security payments at all if they need them to live. There are groups of people in government and the medical profession who have always thought that being mentally ill is a deliberate choice made by malingerers. The more patients who can be classified as mentally ill or feigning illness the fewer people will need"real" medical treatment.

Edit : [Tongue-in-cheek] This might be the future of mental health treatment :
https://i-d.vice.com/en/article/k7b...iticism?utm_source=pocket-newtab-global-en-GB

 

I'll be frank I was always puzzled with the move to online at all. And I'm someone who would go for online or remote for most things due to my health.

But having worked for years where you were just being sensible for being really careful that any time you write something in an email it is official stays forever stuff, I can't see how the current generation - who must be even more aware of the potential - could feel comfortable giving out their deepest thoughts and fears etc through an online conversation. I also don't know the benefit of someone coming back to you that you can't at least hear. Even less when it is basically leading someone through a decision-tree online course.

And the idea that people would do video calls through unofficial things - given I remember in the early days of porn some poor kids getting blackmailed I would need to know a lot about how on earth that would be 100% secure somehow if you were going to basically have your face there speaking onto what could be videoed.

And 'talking therapies' isn't actually what everyone needs. They are a higher rung up but a good psychologist in the old days might for some things in some people be able to put their finger on e.g. situational changes (and then there was functional support OR people who sat up and heard that in institutions e.g. employers schools to make changes), one or two tools, and being really specific in the cause in just 2-3 sessions. And that was all that was needed. And helped. So from a value for money perspective I have never understood the IAPT shove everyone through a generic programme of more sessions. The most important thing about any psychology was 'match' of support to a really specific cause/issue. It's the bit it doesn't even try to do. And doesn't seem cheaper to do a generic length given most won't need that generic length but either none of that specific treatment, less, or a lot more. And I'm not sure who precisely it is the best treatment for anyway so is more better of that?

Anyway without that 'link person' then noone is even checking whether treatments being funded actually are working on that persons issue and making them better. And we all know about surveys, at best they are about satisfaction for the person/service offering it - not outcomes, not really at all.

I don't know whether the aim is to privatise or screw people being helped or given social security, I just think the people they put in charge for the last decades don't know anything about psychology or mental health and play at it like it is a game. Focused on politics of 'be seen to be doing something' over 'what is the best use of resources' and what job needs to be done, where could we genuinely put resource to stop things getting worse (psychologists need to be higher up in schools and employers and have teeth to change policies or implement adjustments - not 'pick up the pieces' only and can't change the source of stress for all kids in a year just teach them to meditate stuff). I think they do not understand what they are doing at all. And the oversight has focused on the wrong things, like accounting focus of 'any old KPI' (hence the acceptance of dodgy short-term satisfaction surveys filled with bias) and no concept of how much more things cost if you run it as a supply-led situation where none of the supply is fit to match ergo fit for the purpose of the individual.

 

Have you read any of Dr Mike Scott’s (CBT Watch) articles?
http://www.cbtwatch.com/the-re-branding-of-iapt-never-mind-the-quality-feel-the-width/

He has also co produced some work to support people with ME/CFS in the past.

 

Since the start most FND papers have been more about marketing that there is a disease of FND than looking at causes and treatments often by using conflicting statements in the hope no one will notice. It has been very successful.

Not only is it accepted as a genuine disease by medics but also by patients so any "attack", also known as scientific criticism or pointing out flaws, is not only terrible for those poor researchers but patients are aghast that people who claim ME is misunderstood are now doing the same thing to them.

 

Author Correction: Why functional neurological disorder is not feigning or malingering

In the version of this article initially published, a statement of competing interests was omitted. The error has been corrected in the HTML and PDF versions of the article.

https://www.nature.com/articles/s41582-023-00821-2

 

Very weak article overall. When skeptics point out that FND symptoms look exactly like what you see in someone feigning those symptoms, all they can point to are n=10 sorts of functional neuroimaging studies and the clinical impression that’s it’s hard to fake symptoms for many years and have it look the same across different times and cultures. The huge push to diagnose everyone with FND is very incongruent with the minuscule evidence base. The people pushing this are very loud.

 

The people pushing this rubbish have devoted their careers ao any inconsistancies will.be argued and defended. Tou can tell this is all fake by the circular thinking and biases in their decisions and the ambuguity they speak.