Review The vicious cycle of [FND]s: a synthesis of healthcare professionals’ views on working with patients, 2020, Barnett, Tyson et al

Full title: The vicious cycle of functional neurological disorders: a synthesis of healthcare professionals’ views on working with patients with functional neurological disorder

Paywall, https://www.tandfonline.com/doi/full/10.1080/09638288.2020.1822935
Sci hub, https://sci-hub.se/10.1080/09638288.2020.1822935

 

• Implications for rehabilitation
• Evidence-based or, at the very least, consensus-based multi-disciplinary care pathways for the assessment and treatment of patients with functional neurological disorder are required to improve equitability of services.

Interesting that they say consensus doesn't need evidence.

 

So while we are accused of "doctor shopping" it is perfectly valid for doctors to pass round patients until they reach a doctor who holds dogmatic views (and it is acceptable for those views to have no evidence in support of them) who is willing to impose his non evidence based and biologically implausible and unexplainable treatments upon them.

Yay for "science"

 

So the people responsible for massively harmful systemic discrimination, who argue plainly that we are hysterical malingering attention-seeking shirkers, basically sub-humans unworthy of basic respect, find it odd that their colleagues hear their words plainly and apply their recommendations? And their advice is to make their recommendations more widespread, literally the source of stigma, in order to reduce the stigma?

This is completely delusional. These people's brains are broken. It's really weird seeing people get everything they want and be angry about the outcomes precisely for being exactly what they built. The patients hate it because it is 1) wrong, 2) insulting and 3) ultimately harmful; the people who fabricate this crap hate it because 1) most patients see through the bullshit because we can read words, 2) their medical colleagues apply the intended meaning of those words, not the fantasy they pretend to sell; and of course the medical professionals hate it because 1) it's completely useless and 2) understand that their words are lies and are uncomfortable with that.

The problem is offering more of itself as a solution, despite having accomplished everything it set out to do and having predictably and inevitably failed because it is a complete delusional fantasy. There is no more "therapeutic relationship" to break. YOU have broke it entirely, smashed it far beyond the point of repair. YOU, the FND/MUS/BPS folks, have built an entire delusional fantasy on lies and gaslighting and think there should be a "therapeutic relationship" out of this? That is the problem.

Again, this is what the average physician thinks of us. There is no salvaging this. There is no possible trust here. There is no possibility of a "therapeutic relationship" built entirely on abuse, lies and manipulation. This paper actually demonstrates that this here is the average opinion physicians have of us, which not coincidentally happens to exactly be the image the FND/MUS/BPS ideology portrays. This is what this ideology has built. Are they genuinely surprised that they got exactly the outcome they built? Or do they simply view this as a problem of PR, of proper marketing? The conclusions certainly support that.

Image from a Reddit thread posted here

 

This also holds if patients are given a made-up diagnosis.

And no level of confidence or authority will negate its made-up-ness.

 

How can a diagnosis of FND be made with any certainty or accuracy? That's a non starter. FND is not defined by objective evidence.

It's a diagnosis made once other diagnoses have been considered and eliminated, by clinicians who buy into FND as a valid concept.

And there are many FNDs as FND encompasses everything and anything currently poorly understood / misunderstood / poorly researched. Or whatever the clinician decides it means. Sadly this will only increase clinician strain about uncertainty and fear of misdiagnosing patients (a likely certainty).

The claims of accuracy and 'rare' misdiagnosis are red flags. Misdiagnosis is everyday and everywhere in pw poorly understood conditions. It's 100% in the territory because so little is known.

The 'rare' argument is the same one I challenged Richard Brown's regardung his article re MUS in The Psychologist back in 2013
https://www.bps.org.uk/psychologist/explaining-unexplained

He claimed that MUS misdiagnosis was rare.

My response published in The Psychologist can be read here:
https://meassociation.org.uk/2014/0...lained-letter-to-the-psychologist-april-2014/

FND, MUS, SSD et al look like a rather desperate attempt to reduce clinical uncertainty where resources are slim and time is tight. But there is no benefit for patients beyond having a label. And much to be lost if patients sit with a diagnosis that could be better understood or treated effectively improving their quality of life and functioning (which might not exist now but never will if researched under FND banner). And as I mentioned above FND does not reduce uncertainty in clinical encounters, quite the opposite.

If FND is allowed to thrive it will comprehensively demolish any attempt to understood any of the conditions being sucked into its umbrella. No one wins. Certainly not patients.

 

There is certainly a naïvety in the suggestion that there are known effective approaches but I think it is important no to confuse a whole range of different issues here.

I can answer that - because patients say so from their 'lived experience'. I have come across socially people who are greatly comforted by the FND diagnosis and we have seen that on the forum from people posting to say that. Remember that the FND patient forums are against ME patients because they deny its reality?

Tyson has bought in to the 'psychogenic' story, clearly. But if we take 'functional' at face value to mean brain malfunction at a subtle level without structural change it is perfectly legitimate. It may be that non-epileptic seizure events can now be shown on fMRI or sophisticated EEG, but since we have little or no idea how brain activity relates to thought that doesn't mean these are not events in a 'mind' if you believe in such a thing. This is where my other interest in the structure of human thought becomes very relevant. I think people have got it completely wrong so it is not surprising everything is in a mess.

 

But all diagnoses are made up to some extent. They all represent imperfect and partial understanding of mechanisms and prognosis. There is a serious problem with FND, yes, but inasmuch as it indicates that the patient does not warrant open brain surgery which might leave them with a real stroke as a complication (an event recently in my family) it is on the right track.

 

Fair points. Perhaps I should have said something like cynically made-up diagnosis.

Because whilst it was initially reasonable to formulate and argue out the BPS theory, deploying it in clinical practice without any supporting evidence—and claiming that just knowing is evidence—is a different kettle of haddock.

If doctors who've found a collection of things they can't explain decide to call it FND, that's fine. The problems start when some of them explain it anyway.