Functional Neurological Disorder (FND) - articles, social media and discussion

[Hutan]

It is quite inappropriate to link that to conversion disorder but that isn't Sarah Tyson's fault.

I have made some comments and provide some excerpts from Tyson's 'The vicious cycle...' paper here:
The vicious cycle of [FND]s: a synthesis of healthcare professionals’ views on working with patients, 2020, Barnett et al
The authors see FNDs as psychogenic, that is, conversion disorder. The paper is indistinguishable from hundreds of other BPS papers in its conception of FND and in its belief that giving the patient some sort of metaphor will help to fix them. It also gives the usual warning that tests and referrals can hinder recovery.

 

[Kitty]

The paper is indistinguishable from hundreds of other BPS papers in its conception of FND

I was just about to post the following...

I think I struggle with this because of the silo-ing of medicine. There don't seem to be links between the specialties where this might be helpful for pwme and pwlc. One specialty gets to say; we don't have an answer, so we just park people in this medical cul de sac.

It's the hijack that bothers me.

If doctors recognise a cluster of signs and symptoms for which a cause hasn't yet been found, they will give it a name. If they don't know how to treat it, they will say so. That's one thing.

It's quite another for some of them to respond by developing a theory that blames patients for it. And to use their privilege to embed it so deeply into healthcare that it becomes a weapon—one used simultaneously to slander and abandon patients, and persuade many researchers that it's too toxic to work on.

 

[Jonathan Edwards]

As someone with an overdeveloped sense of fair play and having lost many years to this illness I find it hard to see the point of the FND diagnosis if it doesn't add anything useful for our specific category, and actively prevents curiousity.

I am not suggesting FND is an appropriate category for ME/CFS - very much not.

FND should cover people with specific neurological symptoms and signs that appear to be due to subtle brain dysfunction of a sort that does not progress to anything else. That diagnosis can of course be wrong and there may be progression to MS etc. but that is a separate problem.

I need to respect confidence but I have come across recently someone who is happy to have the FND diagnosis because it has given them both a rough idea of prognosis and a legitimacy (could sound familiar) that allows them to maintain their self-respect socially and also to be taken into account in continued employment with less arduous responsibilities. As a result this person is able to continue work very effectively under less pressure. That I would call an effective management that does not actually need a controlled trial to see the benefit of.

 

[Jonathan Edwards]

The abstract suggests that there is information to give about FND that is clear and honest, and specifically, that there is effective treatment. I have seen no evidence to support the idea that there is effective treatment for FND's (and let's not forget that ME/CFS is typically categorised as an FND.)

I know what you mean but it isn't that simple.

I have looked after people with 'FND' although I did not call it that. We do have information about these people. We know from long communal experience that a high proportion of people with certain patterns of presentation turn out over years not to have any progressive structural disease and do not progress. Some do have MS but as I have said, that is a different problem. If 90% don't then surely it is reasonable to indicate to people with these patterns that we know 90% have something we do not really understand that doe snot cause progressive damage. Which could perfectly well be called 'functional' if the term did not have two meanings.

Moreover, I think I can reasonably say that I was taught how to manage such people as well as one could. I would see them every fe months and listen to see if things had changed and not asked for the sort of brain interference procedures that can render someone seriously disabled - like a brain biopsy making someone aphonic.

One does not have to say to people 'I have no idea what is wrong with you' which is very distressing for most and not surprising. It is possible to indicate that one knows the sort of illness and its course reasonably well even if, as applies to MS as well, we don't fully understand what is going on.

I can actually see why people might get angry with ME/CFS patients refusing to believe that there is a category of illness that could be called FND. There is. I have seen it several times. It isn't homogeneous but then nor are most diagnostic categories.

 

[Hutan]

I have come across recently someone who is happy to have the FND diagnosis because it has given them both a rough idea of prognosis and a legitimacy (could sound familiar) that allows them to maintain their self-respect socially and also to be taken into account in continued employment with less arduous responsibilities.

Perhaps that person should read the
The vicious cycle of [FND]s: a synthesis of healthcare professionals’ views on working with patients, 2020, Barnett et al review, to find out what many healthcare professionals will be thinking when the patient mentions their diagnosis? If they are aware of that very widespread interpretation, then it may be more difficult to maintain their self-respect socially and they may wish that they had explored other ways of obtaining easier employment.

Even if the person believes the diagnosis has given them legitimacy, should they ever be in an emergency department or hospital ward needing care for an unrelated matter, they may well find that the care they receive is much worse for having that diagnosis in their medical record.

If the clinical teaching is that, if the clinician suspects FND, then they should not do diagnostic testing as that hinders recovery, then that's a problem. It's a particular problem if certain types of people are thought more likely to develop an FND e.g. young women with some prior psychological problems.

 

[Jonathan Edwards]

And would that subtle change in brain function be occurring because of something else happening, like the immune-related processes of the sort discussed in the NIH paper?

The whole point is that we have no idea. And we have to work with that and try to keep people afloat not knowing that. The NIH paper didn't seem to be able to agree with itself what process it was studying.

The critical question is whether or not whatever else happening is causing the subtle brain change is at what we would call a conscious thought? In other words could it be called psychological? The irony is that in conversion theory, as I understand it, the something else is supposed to be an unconscious 'unthought' thought so should not be psychological after all. We cannot distinguish between such unconscious unthought thoughts and firings of some pyramidal cells due to too much gamma interferon. The categories are all wrong, not because some pole are Cartesian Dualists but more because they aren't and should be. It is all a complete confusion. The BPS people have got things entirely muddled. But I think it may be unhelpful to target people like Sarah Tyson on this who are simply floundering in all the garbage churned out while trying to do a job they have been told needs doing.

 

[Jonathan Edwards]

It's quite another for some of them to respond by developing a theory that blames patients for it

Indeed.

 

[Peter T]

I know what you mean but it isn't that simple.

I have looked after people with 'FND' although I did not call it that. We do have information about these people. We know from long communal experience that a high proportion of people with certain patterns of presentation turn out over years not to have any progressive structural disease and do not progress. Some do have MS but as I have said, that is a different problem. If 90% don't then surely it is reasonable to indicate to people with these patterns that we know 90% have something we do not really understand that doe snot cause progressive damage. Which could perfectly well be called 'functional' if the term did not have two meanings.

Moreover, I think I can reasonably say that I was taught how to manage such people as well as one could. I would see them every fe months and listen to see if things had changed and not asked for the sort of brain interference procedures that can render someone seriously disabled - like a brain biopsy making someone aphonic.

One does not have to say to people 'I have no idea what is wrong with you' which is very distressing for most and not surprising. It is possible to indicate that one knows the sort of illness and its course reasonably well even if, as applies to MS as well, we don't fully understand what is going on.

I can actually see why people might get angry with ME/CFS patients refusing to believe that there is a category of illness that could be called FND. There is. I have seen it several times. It isn't homogeneous but then nor are most diagnostic categories.

For me the problem with FND is not as a practical label to describe a clinical grouping whose aetiology we do not adequately understand, but that it is also used as a synonym for Conversion Disorder with associated beliefs that it is psychogenic and can be treated by psychological and behavioural intervention.

Indeed in some situations it seems to be used by clinicians in both senses simultaneously, the former when talking to patients and the later when talking to colleagues and planning treatment/management.

 

[Jonathan Edwards]

Perhaps that person should read the
The vicious cycle of [FND]s: a synthesis of healthcare professionals’ views on working with patients, 2020, Barnett et al review, to find out what many healthcare professionals will be thinking when the patient mentions their diagnosis? If they are aware of that very widespread interpretation, then it may be more difficult to maintain their self-respect socially and they may wish that they had explored other ways of obtaining easier employment.

Why should we be so cruel? What is wrong with their current situation? The person has exactly the sort of support they need. They do not need easier employment, just some more support from junior staff which is precisely what they have been provided with.

Before making suggestions like that maybe see the complexity of real life?

should they ever be in an emergency department or hospital ward needing care for an unrelated matter, they may well find that the care they receive is much worse for having that diagnosis in their medical record.

In this case I see no likelihood of a problem. Interestingly, the situation is likely to be very different from that with a diagnosis of 'ME'. A diagnosis of FND is quite likely to make the A/E staff think 'ah, we may need to be particularly careful about being thorough in eliciting and interpreting signs here because it may not be straightforward.' I the diagnosis is 'ME' then they are very likely to think 'Ah one of those, find a way to get them home as quick as possible.' Which is one of the reasons why I think 'ME/CFS' is an important advance because it is based on a broader medical consensus that includes an understanding of lack of knowledge and complexity rant than being a diagnosis mostly used by private practitioners with dubious understanding of anything much.

If the clinical teaching is that, if the clinician suspects FND, then they should not do diagnostic testing as that hinders recovery, then that's a problem.

Not necessarily. If as is generally agreed, people may react badly to traumatic investigations, on top of the fact that they may be permanently disabled by them, then caution about investigation is absolutely the right thing to teach. Maybe you should see the other side of the coin - gung-ho surgeons ready to snip bits out here or there, whenever a physician asks. I learnt that lesson as a registrar.

Life aint' simple.

 

[Hutan]

I can actually see why people might get angry with ME/CFS patients refusing to believe that there is a category of illness that could be called FND.

I don't refuse to believe in the possibility of a category of illness called FND. I do think that careful (and probably often expensive) diagnostic effort would separate more people from that category now, and even more in the future as we learn more.

I have not yet seen any credible evidence to suggest that the BPS treatments or Lightning Process or anything else fixes people with that category of illness.

So, yes, I have no problem with a clinician telling someone that they have idiopathic hand tremors or seizures, and that the clinician has seen that pattern of symptoms before and, given they have been there for a while now, the symptoms are unlikely to become worse, but that unfortunately there is no effective treatment. But that there will be ongoing reviews and that they should see a doctor if there are new or greatly worsened symptoms. I do have a problem with someone suggesting they know what is going on, and presenting the patient with an explanation involving a vague metaphor and emotional trauma*. I also have a problem with the idea that an illness that is having a material negative impact on someone's wellbeing should not be adequately investigated.

*because those sorts of ideas can cause damage, just as an invasive test can cause damage

 

[Jonathan Edwards]

that it is also used as a synonym for Conversion Disorder with associated beliefs that it is psychogenic and can be treated by psychological and behavioural intervention.

Exactly, but when I was practicing most of my colleagues acknowledged this sort of category without that implication. Conversion disorder was considered out of date Freudian Woo-woo.

I think things have changed a lot in the last ten to twenty years. Quack psychology has been allowed to return to the mainstream - in part due to the assistance of the Guardian newspaper!

 

[JellyBabyKid]

I am not suggesting FND is an appropriate category for ME/CFS - very much not.

Apologies, I did not mean to suggest that you, specifically were; I am extremely concerned about the FND mission creep.

FND should cover people with specific neurological symptoms and signs

This. The FND diagnosis may well have legitimate and helpful uses in some instances. As we have both agreed, ME/CFS is not one of them and, as someone else has said it is on occasion used as way to make people feel validated and heard while actively invalidating them and preventing further investigation. I find this immoral and egregious.

While not a medic, I am extremely well educated in a number of fields, and find it incredibly hard to take that someone else has the power to silence my voice and deny my reality. Which is more likely because I am a woman and have mental health issues - in part due to a life time of misdiagnosis, unrelated to, but probably contributory to my ME.

@Hutan has voiced my concerns better than I am doing:

if the clinician suspects FND, then they should not do diagnostic testing as that hinders recovery, then that's a problem

It's a particular problem if certain types of people are thought more likely to develop an FND e.g. young women with some prior psychological problems.

I was taught how to manage such people as well as one could. I would see them every fe months and listen to see if things had changed

This is what we all hope for, but don't seem to get - worse, if not improved or deteriorating, get blamed for it too and I fear inappropriate application of FND will only exacerbate this.

Apologies for any offence caused; absolutely not intended.

 

[Jonathan Edwards]

I don't refuse to believe in the possibility of a category of illness called FND.

But you must admit that some people with ME/CFS have upset the FND people in that way.

I do think that careful (and probably often expensive) diagnostic effort would separate more people from that category now, and even more in the future as we learn more.

As I say, I doubt this. Regular follow up would help but that is lacking not because of medical professionals but government cutbacks on clinics. As soon as you start doing MRIs you start finding little blobs that get referred to surgeons to do damage. My wife was a radiologist and she saw it all the time.

I have not yet seen any credible evidence to suggest that the BPS treatments or Lightning Process or anything else fixes people with that category of illness.

And I doubt Sarah Tyson suggests anything of the sort. When she talks of effective management she is probably largely talking of helping someone to come to terms with an poorly understood illness. Nobody knows the best way to do that but you cannot do nothing and provide no support. As soon as you provide support in terms of human contact you have to have some content to the conversation. There isn't a humane zero option here. I agree that Sarah may not understand how you evaluate things but simply saying do nothing except special brain scans gets us nowhere - after all it is equally unproven.

I am trying to point out that things are complicated and different problems should not be conflated!

 

[JellyBabyKid]

It's quite another for some of them to respond by developing a theory that blames patients for it. And to use their privilege to embed it so deeply into healthcare that it becomes a weapon—one used simultaneously to slander and abandon patients, and persuade many researchers that it's too toxic to work on.

This. Exactly this.

Thank you for voicing my thoughts on this so perfectly @Kitty

 

[Hutan]

And I doubt Sarah Tyson suggests anything of the sort. When she talks of effective management she is probably largely talking of helping someone to come to terms with an poorly understood illness.

The 2020 paper that Tyson coauthored definitely talks about treatment, with a clear expectation of therapeutic progress. It also gives the impression that the illness is not poorly understood, and urges clinicians to confidently convey that it is not poorly understood.

Treatment of FND should involve a clear explanation of the diagnosis and a multidisciplinary approach [15]. Patients with FND must understand their diagnosis fully in order to optimise chances of successful treatment [16]. Legitimising patients’ experiences and showing them evidence of how their symptoms contributed to making the diagnosis can also have a positive therapeutic effect [17]. Misdiagnosis of FND is detrimental to prognosis [18]. Healthcare professionals (HCPs) who are not aware of FND, or who misunderstand or stigmatise the diagnosis, can exacerbate symptoms and impede therapeutic progress [19,20]. It is import- ant that HCPs are confident with their diagnosis of FND in order to clearly communicate this to their patients and facilitate suc- cessful treatment [21].

The paper is linked here:

I have made some comments and provide some excerpts from Tyson's 'The vicious cycle...' paper here:
The vicious cycle of [FND]s: a synthesis of healthcare professionals’ views on working with patients, 2020, Barnett et al
The authors see FNDs as psychogenic, that is, conversion disorder. The paper is indistinguishable from hundreds of other BPS papers in its conception of FND and in its belief that giving the patient some sort of metaphor will help to fix them. It also gives the usual warning that tests and referrals can hinder recovery.

 

[Hutan]

But you must admit that some people with ME/CFS have upset the FND people in that way.

Well, naturally, many of us are concerned that people who meet ME/CFS criteria are being diagnosed with FND. Because we know the treatments that they are given with that diagnosis won't help and may harm in a range of ways. So, we are concerned about misdiagnosis and the promotion of treatments that are unevidenced.

I don't think I've seen people with ME/CFS suggest that FND or MUS or whatever absolutely cannot possibly exist at all. Many of us think that psychogenic illness is certainly a lot less common than is often suggested though.

 

[Sean]

I have seen nothing from the ME patient community over the years suggesting that FND patients do not have a real health problem, or are illegitimate or undeserving in any way.

The target of my ire is entirely the senior FND experts who should know better than to peddle half-baked nonsense to desperate people. I take a very dim view of that reckless exploitative behaviour.

 

[Peter T]

I don't think I've seen people with ME/CFS suggest that FND or MUS or whatever absolutely cannot possibly exist at all. Many of us think that psychogenic illness is certainly a lot less common than is often suggested though.

I have come across people with an FND diagnosis that definitely feel their condition has been denied by some people with ME. It is possible that this was due to people with ME objecting to the diagnostic label rather than denying the reality of the condition, but it is important if that is the case opinions are expressed with tact. You just have to look the emotions around the ME versus CFS debate within our own condition.

Also we can not assume that all people with ME are accurate or considerate in what they say on line. You see this in responses to people reporting full recovery from ME/CFS when it is not unusual for other patients to suggest they did not have ME/CFS in the first place.

 

[bobbler]

The 2020 paper that Tyson coauthored definitely talks about treatment, with a clear expectation of therapeutic progress. It also gives the impression that the illness is not poorly understood, and urges clinicians to confidently convey that it is not poorly understood.


The paper is linked here:

I was intrigued by the second half of the first quote here:

Misdiagnosis of FND is detrimental to prognosis [18]. Healthcare professionals (HCPs) who are not aware of FND, or who misunderstand or stigmatise the diagnosis, can exacerbate symptoms and impede therapeutic progress [19,20]. It is import- ant that HCPs are confident with their diagnosis of FND in order to clearly communicate this to their patients and facilitate suc- cessful treatment [21].

Obviously the word 'confident with their diagnosis' is somewhat ambiguous just due to the nature of the word, but can be interpreted when taken with the line 'misdiagnosis of FND is detrimental to prognosis' to perhaps be seeming to underline it should mean 'made sure it is correct and not a misdiagnosis'?


I have got so far as looking up that first reference [18] which I would then assume to be about being very careful to warn about misdiagnosis being detrimental to progress. I'll be honest I thought it might also include warnings about how misdiagnosis can happen and so on (maybe case studies).

It is a paper with Carson and Lehn (2016) and feels like it is an interesting 'tipping point' paper re: FND 'development' : Epidemiology - ScienceDirect

I will see if I can find a more complete version (this is just summaries of each section before paywall). But so far slightly thrown that by the time I have got to the section titled 'misdiagnosis' - expecting it to warn of this being an issue [due to that being why it is referenced in the Tyson paper] the part I can see seems to be more along the lines of stating that it is 'unlikely'?

Outcome: misdiagnosis
Misdiagnosis is often a significant clinical fear. However, more recent evidence does not support the apparent degree of worry. In a systematic review of 27 studies of conversion symptoms (n = 1466), we found the reported frequency of misdiagnosis has been consistently around 4% since 1970 (Stone et al., 2005; Fig. 5.3). This figure was unaffected by the widespread introduction of clinical imaging. We concluded that the higher rates of misdiagnosis reported in earlier studies largely reflected...

I was a bit thrown and feel I'd ideally have the fuller access, and need some good re-reading when brain is on top form to make sure I'm getting the correct interpretation of the incidence section I've quoted here below too:

Incidence
For these reasons definitive, high-quality studies of the general population incidence of FND are lacking. Nonetheless, there is some consistency of results, despite different methodologies and geographic settings, with reported rates of “conversion disorder” of 4–12 per 100 000 population per year (Stefansson et al., 1976, Stevens, 1989, Binzer et al., 1997, Stone et al., 2010b). One of the better studies of functional weakness, based in Scotland (Stone et al., 2010b), and a similar study in...

I think it is more about it's estimate of 6% of neurology appointments and because this is an epidemiology paper and one of the sections states that only certain physicians can diagnose it well then maybe there is a 'proxy' under that 'reported rates of conversion disorder' . I assume at this (2016) point in time this was actually saying carefully that maybe those who had been given that diagnosis instead 'might have received' an FND diagnosis, rather than specifically suggesting or even saying between the lines they might be similar things etc. :

A technical barrier to epidemiologic research
The limitation on severity aside the DSM-5 and related criteria-based definitions offers a definite improvement in that they describe objective features that can be tested, including their own utility, but in doing so they raise a major technical barrier. Making the diagnosis requires considerable medical training for it to be reliable. Carson et al. (2000) compared primary care physician (general practitioner) diagnoses to those made in neurology clinics and found general practitioners did

There will obviously have been further papers since 2016 that might also have expanded and added detail to what is intended from any comparison?

Yet it is the specific reference for this 2020 paper in relation to that point about 'misdiagnosis can be detrimental to prognosis'.

 

[Jonathan Edwards]

I don't think I've seen people with ME/CFS suggest that FND or MUS or whatever absolutely cannot possibly exist at all.

I have seen nothing from the ME patient community over the years suggesting that FND patients do not have a real health problem

This is not quite what I was referring to. I am referring to the documented fact that the apparent denial of FND as a valid diagnosis by PWME has upset some people diagnosed with FND. In a perfect world that diagnosis would not have the double meaning it does. But that is not their fault and they cling to the idea that FND means something much in the way that people with ME/CFS cling to the idea that ME/CFS means something.

I do wonder if there is a quite specific dynamic in relation to this conflict behind the current brouhaha? People cling to beliefs. We all acquire beliefs along the way through different routes. Sometimes it may be very hard to marry everything together (there is a word for this) when it becomes clear that one's beliefs need changing, especially when they are close to home.