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Functional Neurological Disorder (FND) - articles, social media and discussion
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A main point of that Barnett, Tyson 2020 paper is to encourage neurologists to clearly diagnose FND and to clearly tell the patient, so that patients don't turn up to appointments with allied health professionals for treatment unaware that that is what the neurologist's conclusion was. The context of the paper, and, as you note, the references cited, do not relate to going the extra mile to be sure that the FND diagnosis is correct, or give any warnings about the dangers of incorrectly diagnosing FND. To the contrary, the impression is that an FND can be made with confidence, and then that diagnosis must be expressed, with confidence, to the patient. Because, the paper contends, the patient's acceptance of that diagnosis is a fundamental part of successful treatment.
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Kitty
Senior Member (Voting Rights)
I hadn't heard about this, but I wonder if the denial was meant to be aimed more at healthcare professionals?
I can see why it would be misunderstood as an attack on patients, even if it was actually meant in the spirit of support. People with ME have been pushed into a black hole created by the proponents of BPS theories, and they're acutely aware that other patient groups may be at risk of falling victim to the same trick. But if the other groups knew nothing of this history, it would look like a baffling and disrespectful response.
rvallee
Senior Member (Voting Rights)
Aka, a confidence artist, or a confidence trick, which rests entirely on effectively expressing high confidence with the intent of deceiving a target about one's true intent, generally in such a way that they don't even know they were tricked. On Wikipedia they merged the various concepts onto the simple topic of scam, which is quite appropriate.
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I will almost certainly take people with FND at their word that their symptoms exist and may be debilitating. If people with FND feel that label is a good description of their condition I also have no problem with that. What I am skeptical exists is that FND is due to a problem with the brain's 'software'. This is how the condition is most commonly portrayed and in my option is something that deserves pushback until such an issue is demonstrated. I am not convinced that it is even possible to have a software issue without a better understanding of what that would mean.
I also feel the same way about ME. I would hope that others take me at my word that my symptoms exist. I am also currently happy to use the ME/CFS label as it adequately describes my symptoms. However, if someone started telling me that ME/CFS is a result of something unwarrented like demonic possession I would have a major issue with that.
If FND was a label meaning you have clear neurological signs, but we can’t find anything on your scans that indicates damage to part of your brain or nervous system, then I think if I were diagnosed with FND I would be relieved to know it wasn't a sign of something known to be irreversible and progressive like MS, Parkinson's disease or a brain tumour, and possibly needing surgery. And I'd be happy to accept that's what the term means.
If I were then offered regular checkups with an appropriate consultant, further testing where indicated and support from a physio with managing my condition, and help with getting whatever employment, benefits and care needs met I would think that was fair enough.
An honest explanation that nobody knows why I have the symptoms, and that nobody thinks I'm faking my symptoms, and a name for my condition would be helpful.
The same applies to ME/CFS - explanation of unknown pathology, a clear diagnosis and name for the condition, regular reviews and supportive management advice and care etc. And similarly clear statement that nobody thinks I'm faking it or that it's due to some flaw in my thoughts, would help.
The problem is not with patients. We don't ask to be sick with something nobody understands. We need a name for our condition, belief it's real and respectful and supportive care.
The problem is with those parts of the clinical professions which decide that both ME/CFS and FND are names made up to hide their belief that our symptoms are psychosomatic or malingering. And worse, that if only we changed our thoughts and behaved as they tell us to, we would recover, and worse again, if we don't recover, we don't want to recover, and worse again, that because we don't want to recover, we must be getting some secondary gain from pretending to be sick, and should therefore be denied financial support, and our families told not to believe us either.
What we have seen happening over the last 30+ years is seeming entrenchment of the structure in the NHS of pwME and, it seems, pwFND being fobbed off on so called 'multidisciplinary teams' consisting of OT, physio and CBT therapists who, in order to prove their worth, have invented programs of 'treatment' largely consisting of CBT and exercise/movement etc. And in order to 'prove' their treatments are effective they make up questionnaires and 'validate' them, and call them 'gold standard' and 'objective'. And they find that a key part of getting patients to fill the questionnaires in correctly to show their treatment is working, the patient has to believe the treatment is working. It seems to be all a big game of let's pretend.
I'm not sure where I'm going with this. It saddens me that some pwFND think pwME are denying their condition is real. We are surely the last people to be doing that, since we also have problems with people with other more accepted diseases like MS saying they believe ME is not real.
I could probably ramble on with more insomniac musings.
My sympathies are with all people, regardless of which label their illness has acquired, who are met with gaslighting and/or apparently sympathetic 'treatment' that claims to be effective but isn't.
If I were then offered regular checkups with an appropriate consultant, further testing where indicated and support from a physio with managing my condition, and help with getting whatever employment, benefits and care needs met I would think that was fair enough.
An honest explanation that nobody knows why I have the symptoms, and that nobody thinks I'm faking my symptoms, and a name for my condition would be helpful.
The same applies to ME/CFS - explanation of unknown pathology, a clear diagnosis and name for the condition, regular reviews and supportive management advice and care etc. And similarly clear statement that nobody thinks I'm faking it or that it's due to some flaw in my thoughts, would help.
The problem is not with patients. We don't ask to be sick with something nobody understands. We need a name for our condition, belief it's real and respectful and supportive care.
The problem is with those parts of the clinical professions which decide that both ME/CFS and FND are names made up to hide their belief that our symptoms are psychosomatic or malingering. And worse, that if only we changed our thoughts and behaved as they tell us to, we would recover, and worse again, if we don't recover, we don't want to recover, and worse again, that because we don't want to recover, we must be getting some secondary gain from pretending to be sick, and should therefore be denied financial support, and our families told not to believe us either.
What we have seen happening over the last 30+ years is seeming entrenchment of the structure in the NHS of pwME and, it seems, pwFND being fobbed off on so called 'multidisciplinary teams' consisting of OT, physio and CBT therapists who, in order to prove their worth, have invented programs of 'treatment' largely consisting of CBT and exercise/movement etc. And in order to 'prove' their treatments are effective they make up questionnaires and 'validate' them, and call them 'gold standard' and 'objective'. And they find that a key part of getting patients to fill the questionnaires in correctly to show their treatment is working, the patient has to believe the treatment is working. It seems to be all a big game of let's pretend.
I'm not sure where I'm going with this. It saddens me that some pwFND think pwME are denying their condition is real. We are surely the last people to be doing that, since we also have problems with people with other more accepted diseases like MS saying they believe ME is not real.
I could probably ramble on with more insomniac musings.
My sympathies are with all people, regardless of which label their illness has acquired, who are met with gaslighting and/or apparently sympathetic 'treatment' that claims to be effective but isn't.
Jonathan Edwards
Senior Member (Voting Rights)
There is no suggestion that any malice was aimed at patients but perhaps not unreasonably the FND patients objected to being told by ME patients that their disease did not exist when of course ME patients are equally insulted if they were told ME did not exist.
A lot people do not get involved in what the name means, they just want a validating label.
The comments from PWME, which may well have been the threads here read by PWFND, were intended as caring but good intentions are not always enough. People here have railed pretty hard against the FND concept. That makes sense to them but I cans why it might be very distressing for PWFND.
Jonathan Edwards
Senior Member (Voting Rights)
I had a thought:
Let us say Hannah had a fault with her fridge so that it kept beeping an alarm and turning itself off so the food went bad. She calls out an engineer. He comes and twiddles a knob at the back and says 'The fan overload sensor was stuck at the wrong setting and I have fixed it.'
The fridge is fine.
But on Friday night the engineer meets with his pals in the pub and says. 'You know what, I had one of those customers who complain about the alarm going off this week. You know the ones. I fiddled with the knob and no doubt will hear no more. I told them it was the "fan overload sensor"!!!'
'You didn't tell them about the little green gremlins we put in the back of the fridge to create work for us to do then, mate?'
'No way, I wouldn't want to upset them, would I!!'
'Good work, mate'.
Somewhere in Edinburgh, two chief company engineers are discussing the engineers' training course for next season. 'Should we continue to teach the boys that there are green men in the fridges or explain that the knob on the back is actually the thermostat and that if they turn it left the problem will settle?' "No, I think we should go on with the green men story, the engineers are so dumb they wouldn't understand what a thermostat is.' 'Your'e probably right.'
Is Hannah being conned? And does it matter to her?
Let us say Hannah had a fault with her fridge so that it kept beeping an alarm and turning itself off so the food went bad. She calls out an engineer. He comes and twiddles a knob at the back and says 'The fan overload sensor was stuck at the wrong setting and I have fixed it.'
The fridge is fine.
But on Friday night the engineer meets with his pals in the pub and says. 'You know what, I had one of those customers who complain about the alarm going off this week. You know the ones. I fiddled with the knob and no doubt will hear no more. I told them it was the "fan overload sensor"!!!'
'You didn't tell them about the little green gremlins we put in the back of the fridge to create work for us to do then, mate?'
'No way, I wouldn't want to upset them, would I!!'
'Good work, mate'.
Somewhere in Edinburgh, two chief company engineers are discussing the engineers' training course for next season. 'Should we continue to teach the boys that there are green men in the fridges or explain that the knob on the back is actually the thermostat and that if they turn it left the problem will settle?' "No, I think we should go on with the green men story, the engineers are so dumb they wouldn't understand what a thermostat is.' 'Your'e probably right.'
Is Hannah being conned? And does it matter to her?
That makes sense to me too. I have tended to avoid getting involved in the FND threads because I don't have the energy to follow all the discussions and it's not an area of medicine I know anything about. I understand the reason some pwME are concerned about FND as a diagnostic label because, like CFS, it has been hijacked by psychosomatic clinicians. I do think we all need to be careful that negative comments about FND are made clear they are specifically about psych attribution, not about the name or pwFND.
I recall that you have suggested that there is no such thing as hEDS, which did cause some people for whom hEDS is part of their identity some consternation. However, you were not suggesting that those people's symptoms were not real. Those posts were allowed here, despite some vigorous complaints from members, because we think that truth matters in science, because we think truth is important in getting to an understanding of disease that might lead to treatments and cures.
I can't see any difference between that situation and people who might say something like FND is not really a clinical entity, but is instead a grab bag of conditions (typically including chronic fatigue syndrome) with a range of causes. So long as comments do not suggest that people with FND aren't really sick, I don't think we should be censoring them. I don't think we have had any reports made to moderators recently about comments about FND on the forum. But, if anyone thinks there are posts here about FND that are not reasonable, please report them to the moderators.
I think a commitment to tell the truth, at least as far as it is known, unless there is an extremely good reason not to, applies to your fridge example too. If Hannah subsequently learns that the cause of her fridge problem was the thermostat, she will lose trust in the fridge mechanics. And she could easily find out, when she mentions the cause of her fridge problem to someone who knows about fridges. Because fridge repair operates in a free market context, she'll choose a new company next time she has a fridge problem, because she would prefer to pay for people who know what they are doing and why they are doing it. Or, more likely these days, she will find a you tube video and fix it herself.
I'm not sure who the fridge mechanics who believe in little green gremlins in fridges are supposed to be or why they are so deluded that they think they are actually putting the gremlins in the fridges. But their trainers seem to be showing them considerable disrespect, with no one benefitting from the resulting flourishing of ignorance. I would certainly prefer my fridge mechanic to know about thermostats rather than holding some unevidenced belief about little green gremlins.
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I don't think Hannah is being conned. She isn't knowing being lied to. However, the truth should matter to her if she actually cares about what is wrong with her fridge and wants to make sure it works correctly. If the technician had come out twiddled a fake knob and did not fix the issue, that would be concerning. The alarm would still go off, the food still go bad but according to the technician it had been fixed. Maybe Hannah then gets blamed for the fridge not working; after all the expert diagnosed and fixed the issue. To me the important question is why do the chief engineers not try to explain the real problem. Are they too lazy to explain it, do they think the lie is helpful, do they have a vested interesting in promoting the green men lie. I think Hannah should be told the truth and give her the ability to chose how she wants the fridge fixed.
Jonathan Edwards
Senior Member (Voting Rights)
I never suggested censoring them. I think you have over interpreted my cautionary remarks. I have simply pointed out that some people diagnosed with FND have been upset and that might just have something to do with Sarah Tyson's outburst?
I think there is a clear difference between hEDS and FND. hEDS is a term for which there is no need which is based on a scientific error. EDS is by definition a group of monogenic disorders. hEDS is not. It is covered well by 'hypermobility'. Moreover, there is little or no evidence that hypermobility in general is an illness or causes pain or fatigue. Pretty much everyone with symptoms who has been diagnosed as hEDS will have something else that needs a proper diagnosis.
FND covers a group of people who have a type of problem that needs some sort of name and has no other. There isn't a something else that it isn't, either. It covers people with specific neurological dysfunction without any detectable structural change. If we don't call that FND what do we call it. It may be a rag bag, but arthritis is a ragbag and is useful. ME/CFS is probably a ragbag. ME/CFS and FND are rather similar pragmatic syndrome terms.
There is a big problem with psychiatrists trying to claim they know that FND is due to repressed bad thoughts. For sure. But there are situations where the FND seems to work as well as we could hope any label would. It is after all a very sensible label for the problem. Maybe more sensible than ME?
The point about Hannah is the we live in a world where a lot of health care professionals are pretty much idiots and the public and the media are happy to jolly along the idiocy very often. It would be nice to say that there is a right way of doing things based on truth but in a real world full of people who often don't care much about truth and cannot think very logically the utopian recipe may not necessarily work as well as one wants.
Jonathan Edwards
Senior Member (Voting Rights)
She doesn't care and nor do most people. They are just happy the fridge works.
Because people are like that. And maybe the engineers really are too dumb to understand thermostats. Life is the way it is. People are the way they are. Health professionals are the people they are. I agree it is a pity and trying to sort out the truth is an important aim for some of us. But while seeking the truth it may be important not to tread on other people's hopes and fears if we have, at present, nothing better to offer.
Or 'bombast'.
There are many professions/jobs where the instructions given, certainly by some training back in the day, was that appearance and staying in command was all. For example teaching and being at the front of the classroom you will still find some who have been led to believe (for various reasons, some of which are indeed valid) that admitting you got something wrong to a large group of kids you require to listen to you etc is just not a good idea.
I think these different professions have terms for this.
It would be rather different if the one reference chosen for this gave confidence to 'being confident' and reassuring the person being told to be so that it was indeed valid, but I find it unusual that it seemed to be more 'selling it' on the basis of claimed epidemiology (numbers are the same) vs perhaps if description of how careful the process of diagnosis being made was (what I would expect such a reference to be).
Should there be a situation where someone has just been dumped into the diagnosis for incorrect reasons (face doesn't fit) then it would literally, if you take what this reference instructs as informing the meaning of that 'confidence' line, be suggesting play-acting to ensure gaslighting and seems pretty similar to the video of Chalder instructing GPs 'not to engage with' patients who turned out to be the sane ones now (and the HCPs with the false beliefs) in a 'hold the party line' kind of instruction.
Another edit: I emphasise that the papers where people who had quite late-stage CJD or other terminal conditions were diagnosed with FND or FMD . And due to this missed the chance to perhaps put their affairs in order etc. But also in some of these papers that even when it was very late situation being at least picked-up by those HCPs they had been sent to eventually and eg prion disease finally tested for/discovered, but the writers suggesting 'the FND/FMD diagnosis was essential' instead of wrong.
And what suggesting that those who have these referred to them being told 'not to question' would do in this circumstance? Surely it is/was supposed to be a backstop/second safety net that if things don't work then either there is 'something else' or the treatment isn't effective (and not the black hole of 'blame the patient' that unfortunately the BPS seems to be about).
EDIT: I guess it comes down to how far such articles go from whether it is a 'that's not our business/place to question/down to you to give or have your thoughts on something' (diagnosis) if there are things behind the scenes that is referring to vs 'backing up' if someone is genuinely unsure of whether something is working the idea that the diagnosis couldn't possibly be wrong and there is no doubt as to the efficacy of that treatment mode (given it is early days so it should still be seeking to develop and use that feedback).
I worry about any advice that suggests if it isn't working then it is down to the patient or something as a 'get out of jail free'. GET would/should/could have been picked up on as not applicable to everyone earlier if the different layers of HCP could have operated differently. In fact I always assumed that when someone suggested (and I thought we were being guinea pigs, but at least guinea pigs are then looked at to see what happens) going more that the observations of that would then be being recorded in a way as open-minded as those pwme who tried it were being. So that what actually happened when 'rolled out to more' was monitored rather than a full-stop situation.
I also think there is a misunderstanding of psychology if the author believes that 'don't engage and keep up the pretence' is going to make someone who has been misdiagnosed more confident instead of being an invalidation. If someone went to a dentist and wasn't sure of eg whether a tooth needed to be removed then the next person they saw would surely get up x-rays as a logical step and explain what the issues were with keeping it you'd hope and someone instead just 'acting confident' would reduce your trust in them also. For example.
I'd expect 'being confident' in knowing what you are delivering as a treatment to be something suggested to HCPs ie knowing about it and doing it safely, but I don't know whether what this turns out to mean is more of a 'read between the lines culture-warning' caveated with unevidenced suggestions that 'it is for the good of the patient'. It's all very well people claiming psychology as their hail mary for that, but what I don't get is the cheek of said people not either being people who've done proper scientific psychology to critic and understand what they are suggesting nor having sought out such professionals and instead convincing themselves 'what they think' is anything the same (it's just their own personal psychology aka assumptions which tend to be wrong and based on their own biases).
Which is a shame because it means the 'reason for being' cited is the one bit they haven't actually checked isn't harmful in instruction, they just seem to have assumed it based on their own presumptions and 'sellability/feasibility' ?
Or have I missed the evidence from the proper psych literature (instead of the psychosomatic one which is 'very low/low quality')?
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I'm intrigued because from the outside it seems like there is maybe a 'hi-jack' (I think someone else used that term, I hope it is accurate) of a term that has been around for quite a while (?) and does need taking seriously by the right people with the right intentions.
Which I suspect is where many of us watch the literature with a horrible sense of deja-vu
Particularly when it focuses on certain themes like saying with one hand 'diagnosis based on positive signs' but then the rest of the article being about suggesting massive prevalence and suggesting certain demographics on the basis of 'face fits' would be the ones to pick out and achieve said numbers. And what the relevant 'history/narrative' might be to claim for said women.
There is no condition/illness I've ever heard of that has benefitted from and found research progressed by taking it from a well-defined concept which is appropriately diagnosed into being a dumping pot for 'other stuff' making research lowest common denominator etc. and yet it seems to have become a habit from certain areas of certain professions?
A prime comparator is the idea that instead of getting to the bottom of what those who have been dumped into (most of us probably have no idea what really labels and tags have actually been put on us vs the closest, most accurate fit given what we know today about these) MUS, CFS, FM, CFS/ME, CF, fatigue, burnout, post-cancer fatigue and so on with noone else caring what the specifics of these are because the intention is to shove them off as a 'fatigue person' to be sent to a 'fatigue centre' and suggested to use techniques to 'magic energy' with laypersons ideas of what gees them up when they have a tired day.
Some FND advocates on X--in particularly Kim H--have called out S4ME specifically for being "anti-FND." I have tried to maintain a cordial relationship with her on X but it is challenging. I understand why she and others consider a criticism of claims by FND experts to be an attack on their diagnosis and on them personally. Apart from repeatedly saying that the criticism is of researchers and of course not of patients, and also noting that of course those challenging FND are not saying patients are making up symptoms or anything remotely like that, I'm not sure there's much to do about it. I do understand that for many FND patients, they get a sene of security or comfort from having a name for their condition and clinicians who are sympathetic, even if others question the value of the "rule-in positive signs" or whatever.
But Jo--if someone has a positive Hoover's sign, the standard rule-in sign for "functional" leg paralysis, do you think that means they have a subtle disruption of brain circuitry accounting for it--which could, if we were using terms neutrally, be called "functional"? Or do you think it's often or often enough masking other conditions, as the literature seems to suggest? I mean, what can we take from a positive Hoover's sign or other positive rule-in signs? Distractible tremor, or whatever?
ukxmrv
Senior Member (Voting Rights)
I am seeing similar reactions on Facebook groups from people diagnosed with Candida, heavy metal poisoning and any number of alternative ideas for their ME or LC.
Some are very happy to 'finally know' what is wrong with them. They spent money on tests and treatments. They want to know why their GP didn't find it.
It's distressing for this group (the Candida etc) to hear it is old or controversial or that it didn't work for person X.
They are upset. They do take it personally and feel that their judgement is being challenged. They don't want to hear in some cases that the treatment made someone else worse.
I have not seen people with FND attacked. It seems to be more common that if the basis of FND is questioned or if the origins are discussed, for some people with FND to say that they feel like it is a personal attack. They don't want to read papers that challenge FND or acknowledge links to ideas like hysteria.
This is very different to ME. We have these forums where every paper is examined, we look for flaws. The FND people on the ME and LC Facebook groups who do get offended don't seem to be doing this yet.
Jonathan Edwards
Senior Member (Voting Rights)
A full neurological assessment includes about 100 pieces of information. A diagnosis is made on the basis of how they all fit together. A single Hoover sign is not diagnostic but a positive Hoover sign in the context of a pattern of other findings may make a subtle shift in brain function without recognisable structural change much the most likely. It is not a yes or no situation. Full neurological assessment done by an expert like my mentor Richard Hughes is remarkably precise as a diagnostic resource. A rushed neurological assessment by someone half competent is highly unreliable.
rvallee
Senior Member (Voting Rights)
I think one of the ways to make sense of this would be to say that we dismiss the concept of conversion disorder, or at least I and many others sure do, and that FND is simply a label stacked on top of it to make it palatable to patients, which is openly admitted in the research.
The conflict in people who accept the FND label is that they think it means something else than conversion disorder, ye olde hysteria, and that is explicitly part of the general psychosomatic ideology: they willingly lie and deceive people in order for them to accept something they will only accept if they think they're agreeing with something else. So not any different than having someone sign a contract and replacing the terms afterward.
So maybe using a conjoined FND/conversion disorder would make the point clearer.
The conflict in people who accept the FND label is that they think it means something else than conversion disorder, ye olde hysteria, and that is explicitly part of the general psychosomatic ideology: they willingly lie and deceive people in order for them to accept something they will only accept if they think they're agreeing with something else. So not any different than having someone sign a contract and replacing the terms afterward.
So maybe using a conjoined FND/conversion disorder would make the point clearer.