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

The leading proponents of FND (those considered enlightened by the FND patient community) most definitely view it as synonymous to historical diagnoses of conversion disorder and hysteria. The difference is that they de-emphasise Freudian narratives about the wandering womb, conversion of emotions into physical symptoms, childhood trauma etc., instead focusing on 21st century neurobabble language. But there’s no question these are the same diagnostic entities. If you watch their public lectures or read their papers they will openly state this.

 

“Neurobabble” is an exceptional moniker for the predominant features of FND literature. I’m beyond disappointed that Mass General Hospital, where some terrific ME clinicians reside, has permitted FND to gain a foothold there.

 

An Editorial.
Published in : The American Journal of Psychiatry
Title : Issues for DSM-5: Conversion Disorder
Published Online:1 Jun 2010 https://doi.org/10.1176/appi.ajp.2010.09101440
Authors : Jon Stone, M.B., Ch.B, M.R.C.P., Ph.D., W. Curt LaFrance, Jr., M.D., M.P.H., James L. Levenson, M.D., and Michael Sharpe

Some clips from a very short article :

 

There was also that systematic review discussed here on the forums a few months back where the search terms they used for the database search were FND, conversion disorder, hysteria etc.

 

Fighting the FND stigma: the consultant neurologist

"Consultant neurologist Jon Stone talks to Kathy Oxtoby about his work to eradicate the stigma around functional neurological disorder

When patients enter Jon Stone’s consulting room, he will see fear on their faces which comes from having a complex and debilitating condition. Many will have experienced paralysis, tremor, and seizures, along with chronic pain.

By the time they leave the consultation, Stone’s patients often have a sense of relief that comes from knowing what their condition is and that it is not—as some clinicians may have told them—“all in their mind.”"

https://www.bmj.com/content/381/bmj.p889

 

https://www.abc.net.au/news/2023-05-02/fnd-patients-say-condition-deeply-misunderstood/102294820

With the Australian budget due next week this report is a pitch for money. What surprised me is that there is no psychobabble or reference to psychology at all. Very pleasing.

 

I'm being cautious or trying to be as I don't feel I'm fully on top of what is going on re: who is getting put into this FND bucket. But this video has someone who had a stroke having had epilepsy previously and notes the fnd part is issues with the messaging from the brain to other areas who talks about therapy 'to retrain the brain', and then someone who notes that her main symptom is tremors but I didn't catch further detail yet she mentioned that she has treatment. I know that traditionally even years ago something like a stroke or brain injury might have such rehab (plasticity really being mainly a thing in children where the functions can entirely get picked up by another area, whereas in those older that term was never used back in the day in order to denote it wasn't possible in e.g. old-age stroke survivors in the same way to recover function as completely from severe damage).

I've then read the FND support Australia mentioned in the last bit and it does seem to believe in trauma-informed mentions pyschological therapy as best when it is seizure-type symptoms and under physical therapy cites Stone and Carson, noting the following for when physical therapy is best for FND

To me (and yes I'm sure there is the possibility Stone etc have done a big spiel claiming 'the unconscious' based on allegiences with Fruedian stuff) this is just using the 'automatic processing system' that e.g. one develops when they learn to drive a car vs say having a conversation whilst doing so. These automatic processes aren't unconscious they just take effort to go back through and remember or describe what you do and is involved in them because you've made them automatic in order to save that cognitive load. And probably other load energy-wise too.

In fact that is something those with ME might well do to find they save energy and are most stuffed when so tired even their automatic stuff like getting through a doorway straight or answering obviously to a question asked becomes affected. We all know we can pantomime polite convo at less energy than having a real discussion on something we have to think about. It hasn't fixed the disability just because we get encouraged to drop that idea and focus on doing the panto. It might feel like a big step forward if you couldn't even do that reliably before and someone shows you it as a strategy to get some words out reliably when someone asks how you are.

And whilst maybe there may be one or two things you mightn't as a well person have programmed into 'skilled automatic processing' but could make use of from energy reduction as someone with FND or ME I'm unsure of its reliability if it is energy-impacted once you've trained it in, or whether training it in is worth the savings gained. I can see it if you have other overlaps with other conditions and it might mean being able to walk 10m vs doing it in an even more energy-using manner.

It also notes OH support including aids for living and strategies etc. I must admit to becoming a bit divided personally when I read other stuff as whilst in early stages I theoretically don't have issues where applicable and from the individual and their own identified focus the website notes 'other non evidenced based therapies' as a list of things, because we all have to be torn between getting nothing and trying someone to massage out that lump somewhere or seeing if any diet changes might help 5% here which could be a big snowballing boon etc. And theoretically someone suggesting distracting stress-reducing activities is of good-intention but it also gets up my nose if read by others as if a cure for something like ME.

It isn't really a health service for a condition it is just a pretend 'why aren't they happy we are offering stuff' and maybe seems OK for early days if you feel the diagnosis fits and you get adjustments and support but I can't help feel surprised by the 10yrs down the line being OK with just making the best of adapting what is there rather than separating and researching to the bottom of what is going on.

I then wonder about those who have ME either as well or misdiagnosed as 'FND' where it is due to energy issues affecting ability to do things or behind symptoms. Is this also commonly happening in Australia too?

And how you could rehab through that issue. And whether it is just a rinse-repeat of (particularly women-heavy) conditions/chronic illness getting bucketed and shoved off to certain general principles. With perhaps something run by patients being less crap and more informed as a 'range of things to try' but nothing actually attempting to be purpose-built. So the cause of the condition for each individual not necessarily being gotten to the bottom of just heuristics of seizure--> try psych (counselling and trauma-informed, inferring 'mood' rather than cognitive psychology which might look at e.g. tiredness and automatic processing when if you look up the literature e.g. on driving mood impact is limited to things like road rage and doesn't come near the stopping physical functioning stuff).

To me from experience of ME/CFS stuff the clarifying what they are asking for: not the 'more' is better if it is the wrong thing (and not just for ME/CFS I notice it with the 'revolution' of the mental health stuff to generic non diagnosis-specific stuff) is the important bit.

Sorry I've just got a load of questions and bits of thoughts in this area because it seems it is never really made clear how buckety things are and who might actually have what background going into it so what it could be or consist of under that term. And such people could need pretty different things.

 

Trial By Error: Mt Sinai’s David Putrino on Long Covid and Functional Neurological Disorder

"David Putrino is a neuroscientist and physical therapist at New York’s Mt Sinai Health System, where he is director of rehabilitation innovation. Over the last three years, he has worked extensively with patients experiencing prolonged symptoms after an acute bout of Covid-19, or what has become known as long Covid (LC). Last spring, I interviewed him about long Covid and ME/CFS. On Monday, he posted a Twitter thread that began with this:

“We are in our fourth year of work to understand #LongCovid and we now know things about it thanks to science. After being told again by a quasi-well meaning, if uninformed, clinician that LC is just functional neurological disorder (FND). Here’s a thread on why LC IS NOT FND.“ "

https://virology.ws/2023/05/04/trial-by-error-mt-sinais-david-putrino-on-long-covid-and/

 

I completely understand the issue about "settled science." The phrase had sort of caught my eye and then it was mentioned on this thread here. When I asked him, my sense in the moment--and I didn't watch or listen to it before I posted it--was that he was not really endorsing 100% every one of the multiple possible pathways he discussed but the general consensus that has built up among the scientists doing the work because of all the findings so far that things are really going wrong in multiple places in the body.

There's obviously past experience with over-claims that turned into dust and that is always something to be concerned about. (XMRV.) In this case, given that Putrino was citing a wide range of findings and plausible mechanisms, I don't think the refuting of any one particular proposed pathophysiological pathway would have the same impact on the overall argument.

 

I couldn't agree more. In fact it has taken me this long with ME/CFS to see all of these parts just in time for watching it all play out almost in identical form here. So I can see all the intentions and pragmatic compromises of 'we'll build from this' and so on. But them not realising that bone thrown is a trick potentially. And that if the power issues aren't fixed and the wrong area dallied with (who have no intention of compromising long-run even if patients think they'll learn and change it from there) it just drags back down other progress by the way the lump and dump is used to do a snakes and ladders on the same demographic who get bucketed.

There is a big discussion to be had with bystanders, and with those 'inside' the community, and in particular those who set up business or whatever with 'good intentions' (genuinely) 'just doing their best with what they have to offer' (but of course their business only being in the area they do/want to do so it would only ever be supply-led)

And that discussion covers topics that disability bigotry is and includes people deciding 'that's good enough as a bone to throw for x they can half that as their life and they should shut up and be pragmatic and a good patient'

It's a dangerous game of compromises and trade-offs for survival for those patients dumped into all of this, and you are correct in flagging that the issue is that crushing systemic issue ploughing on through and people are left so desperate that they are having to make chess-moves just to live another day that mean the system can't be tackled by them. So there is a real failure and choice from those on periphery happily not stepping in and ergo saying this is OK and the same old revolving power-issues playing the same things out again. And yes it won't end until we all, with different conditions, actually get together and tackle the proper thing: chronic illness, particularly for women, not being excluded from the health service and research and so on.

and most bystanders or supporters will not admit that to themselves or others and noone holds them accountable to the fact that by choosing to say nothing they are OK'ing an unnecessary reduction to someone getting a tiny % of a life where the disabled person is in a close to coercion-control situation of 'object to the theory and you lose the thing that means you survive' isn't far off the dystopian literature type stuff. And NO it isn't OK or sufficient, it is disgusting - and the next thing they do is start telling lies to themselves about the truth of that person to cover-up their own conscience, just to compound the horror.

Yes I agree when you are so disabled you can't fill in a form or do a phone call and all the bystanders whistle and at best give you a chat of helpful advice suggesting how you should do these tasks you've noted are impossible to survive (and probably before ill did ten times as much for them) then it is a step up if the support seems a bit more specific to the needs. But it is fundamentally coming from a bad place which agreed has terrible implications for some who needlessly have been dragged into it or sacrified (eg those with ME could indeed have energy issues and get bucketed into something that doesn't help them and makes their lot even worse in theory for some) even if people are making those sort of unenviable collateral damage, better than the alternative type exchanges.

We indeed all need bystanders and allies to step back and so no to this abusive situation where patients are getting deliberately bucketed - in order to sew division and confusion (as part of it as well as to ensure that good research can't be done by specialists because it has been lumped) within the community. And we need them to stop signing off a dystopia as 'OK' and acceptable for others on the flawed fallacy of 'because it is 10% better and some might actually survive even if it destroys them as a person compared to the threat we hold of just leaving you to slowly die'.

Because that's what this really is and we are potentially watching - all dressed up in self-deception of people who might genuinely have good intentions and all that nosense of 'make the best of a bad situation' - individuals who are being bullied and put in hell in order that a few of them will compromise and do their duty as the 'advocate' for the only pathway of survival out. Or them dancing with a devil only a bit and they have a strategy out to rectify it but don't realise said devils have all the energy and power and they are just being toyed with etc. It's painful to watch but only a little of this is about the health condition, it is just a repeat of a system issue that layers all of this 'stuff' on top.

And there is a big discussion about what underlies this -and yes I do think they won't can't see it but it is misogyny seaming under all of this, even if the surface is women making a nice little living of coaching or whatever with good intentions. The system has chosen to refuse to allow for proper areas to be set up in these functional specialisms required for all these femal-heavy serious diseases and bystanders have accepted some awful watching a slow-car crash repeated premise where whatever the condition or the label it's just a free-for-all for the same old not a lot to offer parasites recycling their bigotry under the guise of pretending it is help, and it all being about 'all women with anything chronic need is to be taught to live better and stick a smile on their face as they lead a lesser life'. Whilst there is a pretence of a health system based on the assumption that because it exists for certain other conditions and other demographics this 'other universe' somehow isn't untrue. And sadly this 'other universe' isn't cheap either and is a whole business area that is much more badly organised and less regulated but supports a lot of jobs and patients are coming up against that too.

I know that will be critiqued as deliberately of extremes and it isn't just male-female but I do think that is the bigotry that needs to be tackled underneath it because that is what men and women bystanders accept for other women (and some men who get illnesses that by virtue of all this get accepted under that same banner), as well as plain disability bigotry - because I don't think things are great for other disabilities either. So would we call it 'paternalism' and 'lesser voice assumed for no good reason' type stuff? But yes we need to take this 'other health system' out of the hands it is in with the well-intentioned 'aspire' courses and people making money out of 'offering something to relax' justified on the 'something better than nothing'

 

There is a discussion to be had about how the issue isn't just this, but the usage of this as a straw-man extreme to justify the 'but just a bit' and 'in the absence of anythign else' and all of the other justifications used by sadly a system that seems geared to as gut instinct end up mainly/only offering things that are not even psychologically as a science a good model but throwing the bone of offering them a bit of mindfulness etc.

You know stuff everyone should feel grateful some outsider has decided when 'they look a bit upset' (because said outsider won't listen to how their life has been ruined and make some sensible adjustments that merely are needed because the world has been set up to advantage the 'able' not because 'the able are doing a big favour to work with' etc) has been kind for doing and therefore it is all 'caring profession, best of intentions'.

And these people 'seeming OK because by comparison they are only suggesting a % of it is due to that' people just forget that they then aren't intending on doing a damn thing about the rest and might well have got those % inflated (and that they are temporary anyway because a few kind words only last so long when you realise those saying it never intended to actually help fix the main issue years after being strung along by them).

Except now, so many years down the line people don't realise this is all big business ie a big business. the 'alternative sector' saying its OK because if medicine doesn't help they'll do what they can with holistic. Fine but the write-off and the medical sector then doing nothing to improve proper science covering these people but instead turning their attention to trying to suggest that is now a model that condemns said people to mindfulness and chi treatment 'because 'stress' (as a bad inference of the meaning of that term) must be part of it because people are satisfied with such things'. I've friends who work in the sector. They aren't bad people. Or parasites. But.. their very presence is being used and there is symbioticness with those who are parasites and those who are just slapdash and happy to sign off an inspiration programme of any kind with funding rather than deal with things properly and then the whole thing expands out of hand.

Rather than a condemnation and indictment of how poor the world is for those they did this to with the system as it was, and how just someone giving a little care or saying a nice word meaning they got through the year because when you only get abuse things are desperate, just someone bringing a bin in once instead of shouting abuse at you could be huge. We need a window on how bad things have been made, and then how people's vulnerable position is taken advantage of by those who keep it such - whatever their intentions or whether it was meaning, by not having some proper oversight and bringing together saying it all starts and needs to have certain copmonent parts.

 

If he believes that Covid can't cause ME/CFS because the trigger is known, does he believe that people who have Long Covid don't actually have Long Covid if they didn't have their Covid infection confirmed by a test? Seems to me to be the same argument.

 

he didn't say this.

And this is really a stretch. He didn't remotely say or suggest anything like this.

 

Great, thanks for clarifying what was said.

 

From Unlocking The Mysteries Of Long Covid (The Atlantic, April 2021) —