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

Yes, the situation certainly is harrowing to read about, and the 6 million euro settlement is eye-opening. Is this case the rare example of misdiagnosis, or a sign of something that happens a lot? kind of hard to know. I don't know whether there is anything in the 5.4% purportedly "ruled-in" cases, because that depends on how robust these signs are and how they are interpreted. But the mucking around with prevalence rates, all from one study, suggest confusion or certainly a lack of clarity on the part of the researchers as to what exactly they're talking about. Perhaps in the hands of specific neurologists, the "rule-in" signs are applied rigorously. But for the doctors saying prevalence is a third, FND seems to be a placeholder meaning: "We can't find anything."

And yet FND patients are in despair and are clearly experiencing significant dysfunctions.

 

From personal experience I think it would be more common then they would like to believe. By that I mean the misdiagnosis rate is such a high number that are would be embarrassed to publish a number

 

I get the impression from talking to FNDPortal about his article that FND is taken a heck of a lot more seriously than ME was/is. But maybe that's because there is a more obvious connection with neurology, and the field is mainly the domain of neurology more than ME ever has been?

I guess that FND is simply an umbrella term for any neurological disease that has functional effects, which doesn't fit into a more recognised category and doesn't seem to degenerate (eg, Parkinsons, Alzheimers, ALS etc). If that's the case, then fair enough, and eventually they'll all become defined and recognised and appropriately named. But the worry is that they'll continue to be treated as an amorphous blob with general treatments (applied individiually of course) that help the patient cope with whatever symptoms they produce, but no more than that. Maybe brain retraining in this subset is useful (akin to stroke)? The harm would be to miss something more "obvious" - such as autoimmune channelopathies, or other late-onset genetic conditions - where there might be better treatments?

I don't know.

But I find condemning the term or the concept of FND unhelpful. Questioning it doesn't help those diagnosed with it, even if they/we disagree with the diagnosis.

(CoI: I've been told that my (mildly annoying) symptoms are "functional".)

 

Stone and Sharpe lobbied the DSM-5 to change the name of Conversion Disorder to FND.

Jon Stone, Michael Sharpe and others in their 2010 Editorial 'Issues for DSM-5: Conversion Disorder':

“the name “conversion disorder” has not been widely accepted by either nonpsychiatrists or patients. We therefore need a name that sidesteps an unhelpful brain/mind dichotomy, will be more widely used clinically, and will be more accepted by patients. We suggest that the term “functional neurological disorder,” as a diagnosis for symptoms such as “functional weakness,” would be practically and theoretically more useful …..

In summary, we suggest that conversion disorder be renamed “functional neurological disorder”

American Journal of Psychiatry June 2010.




And so it came to pass - Conversion Disorder (Functional Neurological Symptom Disorder) DSM-5 300.11 (2013)

The DSM5 Primer states:
'Conversion Disorder (also known as Functional Neurological Symptom Disorder or Functional Neurological Disorder [FND]) is a mental disorder characterized by neurologic symptoms (either motor or sensory) that is incompatible with any known neurologic disease'



Stone Sharpe Issues for DSM5 2010 Conversion and FND

https://ajp.psychiatryonline.org/do...NrbmUXASfhJ-JoqZErk7q0O2yn0fjT3iRQZNv6RIvvM-k

 

"Too many Sjogren's patients get diagnosed with a functional neurological disorder (FND) when they actually have autonomic disorders, neuropathy, or even CNS disease. FND is the sugar-coated term for conversion disorder."

 

Maybe relevant to @dave30th given recent discussions you are having over the validity of FND and how some can't accept that it is conversion disorder by another name.

It would be so useful to have this in one place, a single link that can be given to shut people when they argue that they're completely different, when it's plainly explained here that it's just a name change from the knowledge that patients reject the concepts and changing names is always useful since it happens in secret behind closed doors, something that's more difficult today.

I'm not sure if medicine will ever be able to give proper framing to the sheer dishonesty and horror this created. Feels like even in the best case it would be simply swept under the rug as if it never happened. Or that was guaranteed before the Internet anyway. Now with everything they do in secret behind closed doors being eventually machine searchable, oh boy is this going to look like the house of horrors it's always been.

 

Reading this you've convinced me that the real disease that we are looking at is one of hubris potentially. Or grandiosity. I'm sure there is a good helping of those who haven't even deluded themselves they are doing anything other than dumping someone into a convenient bucket and other reasons, but when you read lots of this kind of self-convincing pseudophil (which you worry they might be proud of having produced) it reads like someone trained in a niche area to a high level getting carried away into thinking they are an expert in everything since they are so good at x (which is a common enough issue) - including going off-book into philosophy and how people should live their lives etc.

 

Also, there has been a more recent, sufficiently-powered, study on CBT for dissociative seizures which found no difference in the frequency of seizures with or without CBT.

 

Discussed here, Cognitive behavioural therapy for adults with dissociative seizures (CODES): a ... multicentre, randomised controlled trial (2020) Goldstein, Chalder

 

Tweet from Dr Asad Khan
"Had a stimulating discussion about #FND with some amazing clinicians & academics today. We will be writing a number of papers on this topic in the months to come."

People involved include Brian Hughes, Keith Geraghty, Diane O'Leary, Dave Tuller, and Mady Hornig.

 

The proliferation of discussions and scholarship on FND always leaves me beyond despondent. It seems like such an inevitable way to subvert recent progress in untethering ME from the BPS model. On one hand, many of those involved in perpetuating FND nonsense were also instrumental in ME research. Thus, they can’t just say, well ME was really FND all along. On the other hand, they could, and likely will, argue that ME patients suffer from comirbid FND. This puts as right back at a CBT/GET paradigm.

There also seems to be a small coterie of FND patients who find the diagnosis validating, rendering any critiques of the framework deeply offensive. The rhetoric confronting dissidents is chillingly familiar: militants, stigmatizing, conspiratorial, anti-science campaigners, vocal minority, harassers, etc. These hackneyed tropes are brandished at the slightest sign of criticism, creating a landscape where legitimate substantive discourse is impossible. It also transfers the eye of the audience from the arguments to the individuals articulating them. We’ve seen this all before. I just haven’t seen much of it from patient advocates, but FND seems to have some intractable proponents.

 

I'm confident that, at the very least, the large majority of those mention as being involved will continue pointing out the flaws and inherent contradictions in the FND concept. I am heartened that, despite the proliferation in publications that support FND, there are a growing number of academics prepared to speak up against it.

 

Spot on. It's dumping a heterogenous load of ill people into a bucket and instigating that research must be lowest-common denominator leaving very few things that would ever actually work if you were doing real research, but a nice funding con for those who claim tiny effects across larger numbers. Imagine if historically we'd had 'bad foot clinics' and all research couldn't type the different ways a foot could be bad because some research claimed a 8% placebo reduction in stress from talking therapy so nowhere else got funded. And the world defended that like black was white pumping money into that instead of diabetes or plantar or orthopedic possibilities.

It does seem like a well-worn pattern, not just used in medicine these days. Someone should be diagramming out this model and publishing papers on it. Because its a technique/issue used across institutions (all those who aren't 'a certain type' can sense it even if they refuse to open their eyes lest they have to get involved), and is the real phenomena in itself. It is certain a 'psychology model' even if it is of the physicians and system itself rather than the patients it is perfectly valid in any other part of that subject except clinical - so why don't they chart the organisational as much as the rest?

I think with 'CFS' the vast majority of people knew they'd been chucked in a bucket and when the treatment didn't work or make sense assumed that the issue was lack of investigation because they had something else. They were in positions where whatever their level of debility the bandwidth they were left with (e.g. mild people with no leeway so basically having to do normal people obligations with 70% of the energy and so on).

The NICE guidelines false belief and 'exercise avoidance anxiety' nonsense was slyly hidden. Those around them weren't interested and getting 'involved' with groups was pointless when you think the issue is that you don't have the illness, and you've less spare than anyone to get 'het up' about campaigns.

I find it interesting if some are actually genuinely happy with their diagnosis of FND this time, I don't know what the symptoms are for these individuals and what support/adjustments they are getting (which might make it more understandable). Their relief might come from thinking that this at least gives them something to say it is 'real' and stops the mickey-taking, something to tell work or school to stop the impending crisis there. The nonsense will come out later. And when they realise the intentions involved with it aren't to get to the bottom of the issue.

I do know some kid who was getting bullied where the school put them with a counsellor for anxiety instead of stopping the bullies (doing so might apparently have affected their mental health). To me that is soft-soak medicalisation of the person who was just wrong place wrong time suffering a situation that they should rightly flag, instead of addressing the actual cause (and people with the mental health or at least behavioural issues).

But in a stressful situation if you have to just label yourself to get some relief because under that they will give you a break from bullies or there is nothing and you are promised 'it's just for this' it is astounding how many accept it for themselves or their children. The pressure from everyone is for that bullied person to accept it as it 'solves the issue for everyone' (without them having to do what they don't want to do and step in). It becomes policy then actually believed as an ideology. But yes that could have big impacts further down the line but only for that individual (hence why everyone else so keen for the short-term fix).

I mention this as it seems to be part of 'the con' to trick people initially (or at least split the field by conning some who are given the diagnosis to 'be the god patient and trust the doctor's suggestion), via lack of other options and tiny upside with hidden downside. By that time - when they realise what they've had promised would work doesn't then the power has taken hold. And they've got a label that takes away their voice because these people start making personality or whatnot claims.

But really even if they did know what is anyone allowed to do (and get it twisted against them when they try) - it isn't the fault of the patients, it just shouldn't be allowed to happen in the first place and those who aren't ill and have the benefit of the full picture should know all of this and be standing up against it. Currently you only anticipate that outcome if you've seen it before - because of the PR about the health sector 'wanting to help people', and the peer pressure from lazy bystanders.

A real model of this repetitive issue should be being published so it stops being a conversation about a specific illness or patient, but is 'ah they've done it again, we've got a lump and dump model issue'. And maybe it is time for significant changes in oversight and internal affairs type organisations to be set up looking out for these sorts of things.

 

Good to hear about the group. But the real change has to come from the neuros themselves.
Always fnd approach has to go. Anything unexplained or atypical is always never fnd.
Fnd is concept only. It has no definite pathophysiology only a set conjectures not on any theories.

 

Trial By Error: An FND Patient’s View–and More on Those Inflated Prevalence Rates

https://www.virology.ws/2022/06/22/...e-rates-for-functional-neurological-disorder/

 

I'm not going to name who made the quote about whom or what because politics, but this week I saw someone say something like "We had a lot of theories, just not any evidence" and that basically sums up the whole thing here.

Decades of people and their theories, always contradicted by that pesky reality, and the lack of actual evidence has never bothered anyone. This stuff deserves criminal prosecution for how it went. Not because of the ideas, but because of how they were enforced onto people without any basis. And yet it just plows through millions of lives and no one not on the path of this damn trolley gives a damn.

 

All this FND crap will do devalue the complete medical profession.
Smart patients will lower the respect a doctor gets. They will stop going or not take treatments

 

At least one GP is expressing concern about how easily a diagnosis of FND is given out.

"Really impressed how hospital specialists are able to diagnose Functional Neurological disorder (FND) simply by reading our GP referral letters!"