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

There you go, if only they'd listend to hs rather than their own voices! What's the pharse "llisten to your patients, they're telling ou what's wrong". By completing ignoring severe patients for so long they've completely missed athis symptom.

 

Weirdly, I found since getting LC they I miss words and/or letters out when speaking, typing or hand writing.

The above examples @It's M.E. Linda refers to as "meep speak" and it always amazes us they we cna still understand each other perfectly

"all the right letters, not necessarily in the right order..."

 

Yes and that’s a very important point but even then it doesn’t get us over the line to where we want medicine to be, because using that language still doesn’t exclude the possibility that all known organic pathology hasn’t actually been tested for or tested for appropriately.

This is why just changing the term FND to something else wouldn’t fix everything.

The other core problem besides the proliferation of cheap psychological labels that can be slapped on any set of symptoms in area of the body (see functional cardiac issues above) is the weakness of the diagnostic process for too many medical professionals. It’s as simple as that.

Instead of FND I could have had my symptoms labelled with another more factual/neutral term like idiopathic neurological issue or medically unexplained neurological illness or whatever.

That wouldn’t have helped me. It wouldn’t have actually been identifying the actual cause. It wouldn’t by itself let me know as a patient that everything had been done to exclude all known organic disease within reason.

it also wouldn’t stop other medical professionals, friends and family or strangers from assuming that this label *actually* means that it’s all in my head, even if the intention of it was fully to communicate that there is an illness that hasn’t yet been identified.

Just as previous doctors gave up on me by talking about stress etc, and previous neurologists gave up on me by diagnosing me with FND, if at the same points in my journey I had been labelled with another, better label (MUS - take your pick) then it would represent the same abandonment of me as a patient, the same lack of medical rigor, the same insufficient testing, the same lack of frankly just thinking with appropriate depth about my symptoms.

I only got an actual evidence based diagnosis of a physical pathology by refusing the FND label and insisting that I receive all appropriate tests to exclude known neurological (and other) illnesses.

Idiopathic illness X, medically unexplained symptoms, any term old or new would have represented the same failure of medicine in my case.

They would have missed the actual existing, physically present condition that was waiting to be proved with the right test. It’s a mystery just isn’t going to cut it when you’ve failed to actually do your job properly.

Why did I have to be the one conscious of the possibility that my symptoms (or some of them, I have a LOT) were caused by SFN? Am I a neurologist? Am i a doctor? Did I go to medical school for 5 years?

No.

So what’s going on here? The problem was not identifying potential causes and working systematically to exclude them - it wasn’t just that there’s this name FND for this highly dubious (I’m being polite) supposed clinical entity, it’s that they were FAILING to identify the actual cause which is a known physical pathology. They weren’t thinking it through. They didn’t know enough. They didn’t care enough. They were bad at their jobs.

Because of the weakness of their process they couldn’t even identify SFN as a logical explanation, so they never tested for it.

Or they didn’t understand how one actually tests for SFN and they thought that EMG and NCS tests could pick it up, when they can’t. That would be a straight up lack of understanding of their own field. Later on when seeing more neurologists I had learned this myself and so I knew it was nonsense when they argued it was unnecessary.

None of this would have been improved by giving me another label that isn’t FND and terminating the diagnostics process there. If I hadn’t researched and understood, if I hadn’t pushed and pushed, if I hadn’t slapped down sloppy nonsense ‘practice’ then I would be sitting here without knowing what’s wrong with me and without any physical evidence to point to to prove that my illness isn’t psychological.

Now of course I agree the name and clinical entity FND is huge problem. Of course. I can’t see the letters without getting irritable.

And of course the term and clinical entity invites bad diagnostic practice itself because it gives medical professionals a tantalisingly quick and simple diagnosis that involves minimal testing. Its existence invites its own abuse as a diagnosis, even beyond the shadiness and deception in its background.

But beyond that we are often just confronting a sloppy, lazy, unscientific approach to diagnosis.

We’re talking about doctors without up to date knowledge of their field. We’re talking about shortcuts piled upon shortcuts piled upon shortcuts. We’re talking about overworked doctors wanting quick diagnoses. We’re talking about doctors who over-estimate their own abilities. We’re talking about a sheer lack of imagination, not being able to think through the possibilities.

Right near the start of my sensory neurological symptoms I thought “it feels like my nerves are being damaged”.

Seven years later I had that damage confirmed. I’m just a layperson with limited biological or medical knowledge, but all I had to do to correctly intuit what was happening to my body was to experience my symptoms and think about how those symptoms could logically be produced biologically.

I followed a simple logical chain and extremely basic biological knowledge (uh, what is responsible for sensations in the skin?) and arrived at the right conclusion.

For multiple reasons I didn’t learn about SFN in the right context until many years later, but it should be obvious to somebody who went to medical school what could cause such symptoms.

I don’t know, I’m just so an angry. This is a terribly written, rambling post but I had to make this point. The arrogance of doctors is truly beyond all understanding when they can be this bad at their jobs, again and again and again.

It isn’t just FND and it isn’t just neurology. It isn’t just functional disorders, whatever area of the body they apply to. I see this sheer sloppiness whereever I go in medicine on my personal health saga.

Im sick to death of doctors taking a bit of history, doing 1-2 tests, saying they can’t find anything wrong and sending you off with an air of OOH LOOK AT ME AND MY TWO TEST RESULTS AND WHOLE 5 MINUTES SPENT THINKING ABOUT THIS IM SO PROFESSIONAL. That’s their idea of ‘thorough’ and I dread to think how many patients go misdiagnosed and undiagnosed and how much harm that causes.

The problem is deeper here. The whole profession needs to get its act together.

Because all of too often I encounter doctors where I think “is this seriously how you do this, is this seriously how it works in this field?” Most of the time it seems like they can’t identify anything and do the least effort possible.

Its very often either “we can’t find anything” to obvious symptoms or it’s them quickly making a dubious diagnosis based on scant evidence, assumptions and bias.

I’ve had it up to here with the medical profession frankly. Based on my experience and accounts I’ve read, for complex health problems and chronic ones the medical field gets a D- grade.

There was something about the futility of the debate over the dubious (polite) term FND for the dubious (polite) diagnosis FND that triggered me. I’ve grown tired of dancing around the bush with this point when we are just talking about bad, sloppy practice in a field that couldn’t be more in need of intense rigour.

Rant over. Very ill and depressed today.

 

and phone autocorrect 'auto-wronging'

 

Totally agree with that last line. Too true @It's M.E. Linda !

The whole thing is also, however, definitely about having series of egg-timers whilst you are doing anything and having to learn to make judgement calls on what matters to get to the end of the series of things. Knowing 'that'll do/is the best you'll get today'.

And it is definitely exhaustion-related because practice/hammering at what norms would think would improve things (as per most other things with ME - like sleep ideas) is a great way to make things worse. Particularly if the suggestion is to 'do more' when exhausted.

What amazes me is how the more I edit the worse things can get. That is the really interesting bit. I've learned to go with 'first time' a bit more for various reasons having analysed the actual outcomes of each approach. There will just be massive differences from different moments. I circumnavigate a lot because I get anomia.

And cutting and pasting is a deadly exploit I think would certainly be interesting to a cognitive psychologist. It very much seems like a spatial task at the same time.


So I know with me that a lot of what people see as 'a problem' is actually not a problem but a solution that enabled me to do anything in the first place (or heads off an even bigger issue) and is a 'best fit' vs solutions/edits themselves exhausting to bring the whole thing down a further level of competency (editing tires me quickly, and vice versa is the thing most vulnerable to error as I exhaust, so there is a tipping point where I've made myself worse and therefore I'm typing over good text with worse text).

On a safer more specific thread it would be a discussion I'd be more happy to go into details on what I've observed over the years as it is quite fascinating and does I think give a bit of insight into what's going on in the right hands who would spot the detail of contexts etc.

But I've noticed that with well people the ones who have the biggest issues are those who choose to miss the point and/or either have their own issues (ie the cause of the problem actually isn't me), are uncharitable or aren't 'listening to understand' then reply to that with their own thoughts as an 'honest discussion' and participate, but engaging in rhetoric where they are just listening to summarise or hear what they want to and waiting for their turn to speak and nitpicking to distract the conversation anyway.

So I'm very cautious about those who might over-analyse it and come up with 2 + 2 = 5 . Or use it as an excuse to 'in the name of improving us' actually potentially cripple our ability to communicate concepts and things that we need to by humiliating us on stuff that in the bigger picture of choices matters less.

 

Twitter thread by someone who was initially diagnosed with FND and Fibromyalgia, given Physical Therapy, meditation, yin yoga, and talk therapy, but subsequently received a diagnosis of May-Thurner syndrome (a condition whereby one blood vessel becomes compressed by another vessel against the spine).

 

I saw that on Twitter, it's excellent. Worth reading the whole thread for a detailed no-nonsense account of how assigning an FND label rather than investigating and diagnosing/treating the actual illness, can be dangerous. We know all this, but for anyone to whom this is news, it's a good eye-opener.

 

Forgive this possibly very ignorant question but:

Would it be accurate to say FND is basically a way to diagnose dysautonomia, whilst blaming it on the patient?

 

To FND ideologues, dysautonomia is definitely FND, but it basically encompasses pretty much all neurological symptoms that lack a firm diagnosis. Long Covid turned out to have been a major boon to them. Even more so as no one wants to deal with those issues.

The blaming it on the patients, though, 100%. Or whatever. They may use different words but when the solution involves believing in something and behaving in a certain way, it's a distinction without a difference.

 

NZ's Goodfellow Unit podcast: Functional neurological disorder with neurologist Matthew Phillips

https://www.goodfellowunit.org/podcast/functional-neurological-disorder

 

Just incredible, really.

But for anyone from the outside who is sceptical about how astonishingly sloppy and unscientific diagnostic practices (and how casually doctors fall into them ) frequently are, this would serve as a great clear example.

If anyone harbours doubts that FND diagnoses are being handed out willy-nilly, this quote should dispel those doubts. Of course there is much, much evidence besides but none so succinct as this.

Just astonishing. But that’s the reality.

Let’s just rephrase this deeply depressing quote, let’s translate it.

“If you’re a doctor - someone who treats sick people - and you have a sick person who…complains about being sick, then lists more than one symptom and you get confused* then you can safely skip the whole search for evidence, testing of hypotheses, differential diagnosis and just go straight to slapping FND on them.”

Imagine saying this. Imagine letting it be known that this is how you practice medicine. Even worse, imagine presenting this complete failure as the best practice, the best way to approach such a situation.

What is the point of all the years of medical school and residency etc if this is how you end up approaching a diagnosis?

How can you present this as an evidence based, rigorous process of diagnosis?


*= you can’t IMMEDIATELY work out what the symptoms could be caused by, nor are you capable of understanding that these multiple symptoms may be caused by the presence of more than one illness, which could present a confusing picture

 

If…sick people…tell you the ways in which they are sick….you should immediately conclude that it’s all in their head.

Ah, yes. Yes of course. Perfect. No notes. This is the very height of the medical application of the scientific process.

I can’t see how this approach could ever lead to misdiagnosis.

( I was misdiagnosed with FND multiple times, and I would list many symptoms because I had many. Later, I was diagnosed with a physical disease, a degeneration of my small nerve fibres. Both inherently and additionally because it can extend into the autonomic areas, it can produce a dizzying array of complex symptoms. I had a type of neuropathy, not an illness that “exists at the boundary of the neurological and the psychiatric”. I just needed the right test to confirm this, instead of relying on the previous fanciful theories that had no evidence for them.)

If you can’t instantaneously work out a probable diagnosis and feel confused by multiple disparate symptoms then you must blame the patient for your sense of inadequacy and conclude they’re a bit, you know, *taps head*.

 

I just wanted to point out a few things that go beyond me reacting to your quote, and to look at the podcast itself.

Firstly, the podcast is available n from all the usual podcast libraries like Apple Podcasts or Pocket Casts etc if you want to download it and listen to it properly.

https://pca.st/episode/3bdcd91f-f771-4249-8ba6-628454006ffd

This is interesting, take-home points for practitioners, from the official Goodfellow link you provided:

Point 5: are they really? Are you sure about that?

The podcast is a goldmine of telling quotes. Hard to know where to start but here are just a few:

11:50 - “and to be honest the history is, I would say 90% of the diagnosis. The examination is rarely super helpful”

11:57 - “I think the best thing about doing the examination is that, uh, the patient knows that you’re looking hard and you’re taking them seriously and you’re really trying to tease out if there’s any other structural issues going on”

Very suggestive to me that he feels it’s very important to reassure the patient that you’re taking them seriously. We see this a lot in in FND literature - don’t let on.

13:05 - “…are we doing investigations to exclude organic pathology?

“Not so much to exclude it, but to see if there’s additional organic pathology.”

As we see again and again, it seemingly doesn’t matter that the real world practice around FND is self-contradictory.

FND is meant to be something that involves no organic pathology, but we see that in practice they will diagnose FND even if organic pathology is found - that is if you ever even do testing that can actually reveal that.

14:44 - “tests are there to confirm what your brain thinks. They’re not there to give you the answer. We fall into this trap of ordering an MRI or something to give you an answer”

There we have it. The only utility of tests is to confirm your assumptions. If the tests don’t contradict your assumptions, then they must be correct. Of course the problem here is that you assuming you’ve done the right test and that the test result is accurate.

I had tests that could be taken (and were) to ‘confirm’ the consultants assumption of FND, because they didn’t reveal any organic disease. The problem was that the tests I was given were physically incapable of revealing the organic disease I had.

 

https://www.youtube.com/watch?v=_ZTRE_CkT8U

A lecture on FND by the guest on the above podcast, the neurologist Dr Matthew CL Philips.

This is also another absolute goldmine. I cannot urge strongly enough that anyone interested in this subject both listen to the entirety of the podcast and also watch this lecture.

So many fascinating comments and I’m only one-third of the way through it.

“FND constitutes one third of out-patient neurology referrals”

Chinny reckon?

“Most doctors, once you get to three or four symptoms, our brain starts to turn off and go arrrghh I can’t localise it. There’s just too much stuff going on here, why does this person have, you know, the list”

You’re really showing yourself up, man. You’re confessing publicly that you and your colleagues are easily bamboozled. More than 3/4 symptoms and you can’t handle it and your diagnostic approach just totally collapses.

When pushed, even slightly, you become lazy and reflexively fall back on a broad diagnosis that conveniently covers all and any symptoms. Then that assumption informs your entire approach to the patient, future tests and how you interpret them.

The patients fate is sealed because your diagnostic approach is shockingly frail and because you don’t want to deal with ‘complex’ cases. Why deal with complexity and hard work, when there’s a diagnosis that has faux simplicity and minimal work right there?

You’re biased towards wanting to have the success of making a diagnosis, because that validates your sense of professionalism and knowledge. But you don’t want to do the hard work of making sure that your diagnosis has been arrived at rigorously and with a firm evidence base - if it sounds plausible enough it will do, and you don’t need to wrack your brains to exclude all possible known conditions that could explain the symptoms.

You can just show that you’ve excluded a couple of things and then, well, that covers everything. They don’t have , say, MS, so they can’t have, say, something like a neuropathy that only affects their small nerve fibres. You certainly don’t need to test for it! Why do further tests when your instinctual diagnosis is obviously correct?


How remarkable that you are never wrong, have a very high success rate with making firm diagnoses and strangely have few patients leave without a diagnosis. It must just be how incredibly good you at your job, there are no other factors that could explain this pattern.

This is astonishing. Imagine a physicist saying of themselves and their colleagues that their common practise is “ooh we get more than 3/4 data points and we get confused so we just tend to say it’s X”.

Imagine a physicist openly talking about this and expecting to be showered with plaudits for their professionalism and methods.

 

This is so bizarre. I'm trying to extend this rationalization to other professions and nothing computes. It's so far outside of all norms to be so dismissive of not only the tools of the trade, but to insist that those same tools they here scoff at have all the answers, therefore when they come back negative it means that it must be "magical traditional explanation built around lack of evidence and logical fallacies". Both rationalizations are something that is trained out very quickly in all technical professions.

It's a system built on contradictions: you must have a verified test or it's invalid, but for this entire category of things, which is expanding to take over essentially 1/3 of all health problems, you must scoff at the very notion that you need to perform tests at all. You can simply wing it. And never look back. Never record anything. Never follow-up. No diagnosis is valid without strong evidence and valid tests. Except those ones, where tests are stupid and the only evidence is absence of evidence, a major logical fallacy.

In most technical fields, as a junior professional applying this way of doing things will often get you fired, or marked off for any promotion or involvement on critical tasks. Permanent entry-level status. As a senior professional, it will likely get you fired, possibly disciplined or even sued. But medicine being its own sovereign domain with a huge power imbalance, there it's standard operating procedure. You normally simply can't stay in business or employed behaving like this, delivering such awful outcomes and neglecting so much of the job. It only works with natural monopolies.

Medicine has really set itself in a class of its own, and in the wrong direction. Since I was a child, medical science and technology have made enormous progress, but general practice and health care systems have degraded so badly that they are obviously worse than they were, in the late 80's early 90's. And this isn't just about me being a child at the time, the basics are clearly getting worse over time. I wouldn't know it if I didn't have to follow this stuff, but it's beyond obvious, it's screaming loud.

No wonder the basics are degrading so hard. Even worse, it's happening to thunderous applause and loud "ENCORE, ENCORE!".

 

There is a very realistic case that FND overruns Long Covid before it does ME/CFS. Unless things change radically, it will happen sooner or later. It's a race between this and a breakthrough solid enough to overrule all the sunk cost spent by this point:

I think that HSE is the Irish health services?

 

Has anybody else listened to this yet? There’s a lot in there that is revealing.

I think we all can see what’s going on here and the problems with this approach.

BTW side note and PSA: I got these transcripts from the Apple Podcasts app.

You may not be aware that they recently updated the app to include automatic transcription of podcasts. It is done by the software, based on machine learning (speech-to-text) and not from a transcript uploaded by the podcast makers.

This means that any podcast uploaded to Apple Podcasts has an available transcript. As you move through the podcast the spoken words can be displayed in real time, in the same way real time lyrics work for music in Apple Music and Spotify.

The transcript is also searchable. Highlighting passages in the transcript offers the option of playing the audio from the highlighted text.

If you find transcripts useful and have an iPhone or iPad, check it out.

 

Truly astonishing. Inept and disquieting.

As someone misdiagnosed with ME/CFS this really gets my goat. I could quite easily have been labelled FND. Just a label after all.......

 

The podcast is just a primer on how to con the patients.

I was diagnosed with FND back in the 90s and got the software/hardware BS. Luckily for me, I had surgery in the early 2000s which was looking for something else and found the cause of my "FND" and it was fixed. But I wouldn't be at all surprised if the diagnosis is still in a prominent position on my records so that anyone reading my records can't miss it.