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

All well and good except that far too many of these ‘idiotic’ health care professionals use their position not to look for the truth, but to actively ‘profit’ at the expense of these patients fobbed of with a meaningless diagnosis. These Health professionals pretend to offer something better, as has happened with ME and countless illnesses before that. They care nothing for ‘patients hopes and fears’ as long as they are justifying their ‘pay check’ and career advancement with those who employ them, which is not usually the patient but some third party insurer or other service provider.

Life may be the ‘way it is’, but the reality is we are constantly working as a collective society or as groups of societies to find better and fairer ways of living/conducting our interactions. We do this by changing the Regulatory Framework around how we conduct our ‘living’ or by ‘doing politics’, itself a messy and difficult business.

Maybe if the too many health professional ‘idiots’ were better regulated by their Profession and poor science and poor clinical care provision were the subject of greater scrutiny and action taken to improve health professionals competency and (ethical) behaviour, ‘the fridge’ might actually stand a better chance of working rather than us all having to pretend it does.

A long time ago it was said that nothing would change for ME unless it was through ‘political action’. Like it or not that is the ‘way it is’. We all have a part to play in helping to change the way our health care professionals conduct themselves to better meet a lot of patients and societies needs, than they do at present.

 

I don't disagree with that for a minute. My point was that until things have actually changed in that way it may not necessarily be helpful to tell someone who has been told they have FND that FND does not exist. I am not sure but I don' t think it is easy to be sure.

In India the fast lane of a dual carriageway highway is occupied by ox-carts coming in the opposite direction because there are no crossing points for local farmers to get to the right side. The middle lane is occupied by ox-carts going in the right direction and the slow lane by lorries. So if you want to go anywhere you have to overtake everything on the hard shoulder. It would be nice if the fast lane didn't have ox-carts coming the wrong way but at present that is how it is!

 

Yes, absolutely. If functional means cause not yet known, it's as good a term as any.

The problems start when there's a suspicion it's presented to patients this way to make it acceptable, but between doctors it means the cause is known, ha ha, it's hysteria, wink wink.

It's funny how there's been so little onus on medicine to show that a condition is caused by hysteria, and so much on patients to find ways of showing it isn't.

 

I think we need to look at this at two different levels.

Firstly, from the perspective of a person diagnosed with "FND" they have remarkably few options. Unlike pwME who have always had (a small number of) sympathetic physicians & specialists the lot of someone with (say) pseudoseizure has, until very recently, been a very uncomfortable lot. Historically they were faced with a choice: accept an outright dismissal of their symptoms, or accept a diagnosis of the very Freudian "conversion disorder". Now they have a third option: seek out someone like Nicholson/Edwards/Stone who will give them an "FND" diagnosis, referrals for physiotherapy and CBT, and generally treat them like human beings in need of help. For a pseudoseizure patient that will be a vast improvement on how they were historically treated. I can imagine that some of these patients are going to become rather attached to this group of physicians and their ideas. At a human level - as someone with an almost equally stigmatised illness - I am very sympathetic to them.

From the perspective of an ME patient, though: I struggle to make any comparison between my own symptoms and day-to-day lived reality and that of someone with pseudoseizures or pseudoparalysis or whatever they're calling hysterical blindness these days. My symptoms aren't anatomically incongruent. They don't vary based on my mood or emotional state. I can't be distracted out of them. There's no evidence that they exist at an unusually high conscious level or close to conscious thought (as pseudoseizure obviously is for those who have ever observed one). If it weren't for their favourite physicians constantly trying to bring ME/CFS under the FND rubric we wouldn't be discussing this group of patients at all.

The other point I'd make is that I suspect quite a few of these "FND" diagnoses are probably bogus. I have my doubts about the average A&E registrar's ability to differentiate "functional stroke" from hemiplegic or basilar artery migraine, for instance...

 

How do we work out probabilities for something we are essentially clueless about? Regardless of whether FDN is a subtle shift in brain function, an issue with the brain's software or a disconnection in the function of the lobes and emotional processing, it has not demonstrated to be a possible explanation. It may make intuitive sense that that there could be a subtle problem with brain function in FND, but there are a lot of intuitive things that are wrong. I just don't see the jump between certain symptoms without structural changes and this other mysterious FND thing. It reminds me very much of people who argue that a miracle occurs because they don't think the other options are plausible. Even if you think you have ruled out other possibilities (which is probably not the case) that doesn't mean that the thing we have no idea is even possible is the most likely thing to have occurred.

 

I actually see them as very similar.

I think FND is based on a scientific error much in the same way as you see hEDS. Just like you think there is little or no evidence that hypermobility in general is an illness, I don't think that a subtle disfunction of the brain's software is an illness. I want to stress that I think these people do have the symptoms they say they do (as I am sure you would say about hEDS patients), just that it isn't caused by whatever the FND practitioner is ascribing it to. I think that the people who have been diagnosed with FND will have something else that needs a proper diagnosis, even though as is probably the case with hEDS, something cant always be found. I'm sure it is equally distressing to the hEDS patient to tell them we can't find what is actually wrong them as it would be to the FND patient, yet you are saying one deserves to be lied to and one doesn't. In both cases (and as with ME/CFS), I would advocate for actually finding the real problem as (unless you get lucky) that is the only way to find treatments.

hEDS covers a group of people who have a type of problem and symptoms that may be useful to give a name. Sure we could call this hypermobility, but if it is just a label (like you say FND is) and the patients and clinicians like the term hEDS, what is the issue? Just like you probably want to get rid of the term hEDS, we could get rid of the term FND and try figure out what is actually the issue in these patients. If the terms are just categories, then I don't see any issue. If the terms are not categories and are trying to incorrectly imply underlying cause, then they are unjustified and shouldn't be used.

 

Until we know more about it, maybe those explanations are placeholders as much as anything? A "subtle shift in brain function" covers a lot of possibilities, and it doesn't even suggest the brain is necessarily the principal cause of the symptoms. Its function can be influenced by all sorts of things.


ETA: cross-posted with @Eddie's second post

 

True but a "subtle shift in brain function" is a useless definition that tells us nothing. Eating a hamburger causes a subtle shift in brain function but that has nothing to do with FND.

 

But that might be the point? Doctors who use the term FND in the straightforward sense don't seem to be trying to explain the cause, they're trying to say the cause isn't known.

If it's producing neurological symptoms there's a good chance there's been some shift in neurological functioning, but that's as far as it goes.

 

If FND refers to a neurological condition with no known cause then I have absolutely no issue with that. It would be like if hEDS only referred to some general hypermobility, then I don't think anyone would have an issue with that either. The problem is FND (as with hEDS) entails more than that. There are rule in signs, explanations of why it is occurring, bad treatments, poor studies etc. As Hutan mentioned above, a quick google search will highlight all sort of undemonstrable nonsense associated with FND. I doubt there is a single FND practitioner who would say FND is merely an unknown neurological disorder.

 

Yes and "subtle" here can mean occult in terms of being poorly visible to our current imaging / cytology / molecular techniques, recognising that we also can't simply go biopsying people's brains and are mostly forced to rely on indirect evaluation that is further hampered by the unique physiology of the blood-brain and blood-CSF barriers. The shift in brain function caused by a subtle-to-see problem could however be major and the symptoms patients describe are clearly very major. The symptoms themselves are not subtle. And to further add to the difficulty in understanding, the symptoms can be variable and unpredictable.

A psychological explanation as in conversion or a more modern top-down / interoceptive explanation à la software just doesn't comport, for example with Havana syndrome being diagnosed as FND. What comes across from those patients' descriptions of their onset was being previously high-functioning and life-long perfectly well, and with no prodrome suddenly an event happened associated with onset and progression of these symptoms. In their case, there was a very unusual noise and other sensations and, where by chance available, a description of electronic interference with adjacent devices, which, if genuine, is literally a hardware not software problem in those devices.

 

Back in 2019, the NYT article about Havana Syndrome being a functional disorder prompted me to write a blog saying that why PEM is the proof that MECFS is not psychogenic. PEM can come when you don't' expect and not come when you expect. (A common refrain of early patients is that PEM comes and goes without reason or rhyme). You can't think, consciously or otherwise, PEM into existence, in other words. FND, as I understand, is similarly defined as "altered sensory or motor functions". So, unless your unconsciousness is feeling something 24 hours later and putting you into PEM when your conscious mind is expecting otherwise (and vice versa), MECFS can't be FND either. (Havana Syndrome, BTW, lacks PEM). So, yeah, I'd agree 2-day CPET result, if/when universally accepted, would be the strongest proof that MECFS is not an FND. I'd admit though, FND people still could invent a concept like delayed interoception to explain it. (Edit: typo fix)

 

I am not sure what the problem is. For structural lesions neurologists have established that an expert clinical assessment can pin almost anything down precisely on the basis of known anatomical connections and functions. If a clinical pattern cannot be fitted into that one has to assume that it arises through more subtle functions. And decades of experience has confirmed that with current techniques no structural lesion is found. Mistakes are made, and scans pick up unexpected things for sure, but having worked under an expert clinician I know that this is mostly clinical laziness. The assessment system, if done meticulously, is extremely reliable at least in terms of defining a very small set of options.

So Hoover's sign, in a full context, indicates that no structural lesion is likely to be found and that we need a term for a more subtle mechanism of malfunction. We have no idea what but that doesn't come in to the process.

 

So what about schizophrenia and paranoid psychosis? Those are subtle dysfunctions of the brain's software that make people very ill indeed.

 

The issue is that the symptoms actually have nothing to do with the hypermobility. There is no evidence that they do. The symptoms attributed to 'hEDS' are just as common in people who are not hyper mobile and have nothing to do with bendiness as far as we know. So the category is not only pointless but misleading.

 

The rule in signs prove to be pretty reliable. Not always and there are mistakes, but usually due to careless assessment.

If you look at the stuff Hutan posted it is interesting that conversion disorder is always presented as one explanation, as 'sometimes known as' or 'has been regarded by some as'. It is acknowledged that this isn't essential to the category concept. The category has to be there because it describes a group of people with a specific set of symptoms. People with 'hEDS' do not have a specific set of symptoms. They have much the same symptoms as people without hypermobility.