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

dave30th said:
Jon Stone has just published another essay in which he questions whether CODES had the right primary outcome after all. Qualify of life measures are "arguably" more important to patients. Right. According to that theory, patients are more interested in that their seizures are less bothersome to them more than they would prefer not to have seizures at all.
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Well, then.

The fuck is up with this:

me-qol-compared.jpg

But of course they're just saying whatever. Heads they win. Tails we lose. Not tossing they win and we lose.

By every metric their junk is useless. Wherever they move the goalposts there is already failure there.
 
Moved posts
Can anyone explain what Jon Stone is saying now about the structural changes found in the brains of pwFND?

https://neurosymptoms.org/en/faq-2/...-changes-to-the-structure-of-their-brain-too/

Can people with FND have changes to the structure of their brain too?
...
They found that there were some areas of the brain, in the ‘Gray’ matter that were smaller in patients with FND than healthy controls. These were particularly in areas of the brain related to movement and sensation and areas that are important in experiencing emotions and ‘fight or flight’ responses.
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Why didn’t my MRI scan show these structural changes?
The changes being reported are all subtle and at a group level, so needs the pooling of the scans of lots of individuals to find a discernible difference. The approach taken to investigate these potential brain changes are using research methods that are not validated for clinical use and the clinical significance of these findings remains poorly understood. Furthermore, they are not detectable on individual brain scans which are typically normal in FND, unless the person has another neurological condition or an incidental finding (those are common occurring in 1 in 6 of the population)....
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Why are the brains of people with FND structurally different?

We don’t know. It could be that people with FND are born with differently structured brains that make them susceptible to the condition....

In fact, people with most psychiatric disorders, such as depression, anxiety and PTSD, have also been found to have structural changes in their brain too, and to a degree that is similar to the studies in FND...

Another possibility is that people with FND develop changes in the structure of the brain as a consequence of having the condition, rather than a cause of the condition. That certainly happens in other neurological conditions....
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So do these studies show that it should now be classified as a purely neurological disorder?
FND has a really difficult and stigmatised history. For a very long time it was classified as a purely psychological disorder. In the last 20 years we have been uncovering some of the ways in which FND symptoms are caused in the brain, and have made a lot of progress, but we are still a long way from a definite model.

All of this shakes up our preconceived ideas about what a neurological disorder is and what a psychiatric disorder is. It turns out that the division is false and all of them are occurring in the brain.
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But it shouldn’t be called FND anymore right?
  • People with FND have a pattern of limb weakness that is different to people with structural damage to the brain from stroke and Multiple Sclerosis. In FND the weakness affects parts of the limb most that are strongest in other neurological conditions like stroke. In addition clinical tests like Hoovers sign show that although the patient finds it hard to make the movement – in fact the more they try the worse it gets – those movements can transiently return to normal when they are NOT trying to move it – for example moving the other leg.
  • People with FND walking problems (Gait disorder) can sometimes find that they can’t walk normally, but they can run or walk backwards. This seems very strange but actually makes a lot of sense in terms of how we know the brain works.
  • People with FND tremor may have a very shaky hand, but when they are asked to copy a movement made by an examiner it may improve or stop. Or it might take on the rhythm of the examiner. These are things that are rare in any other condition
All of these common clinical features clearly show there is a problem with function which is much more obvious than a subtle problem with structure. If it was the structure then the weakness would not transiently improve, the tremor would not transiently stop, and the gait would not improve....
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Shouldn’t doctors spend more time explaining these structural changes with patients?
Most people with FND think, at some point, that there must be some damage to their brain to cause the symptoms they have.

Understanding how symptoms can transiently improve and how rehabilitation therapies can build on then to gradually gain greater improvement is a key part of clinical treatment. These new FND treatments have already been shown to be promising in randomised controlled clinical trials.

We may at some stage need to build in an understanding of these structural changes into our models and the way we explain FND. But at the moment we simply don’t have enough data to be able to use this information in a clinically useful way.

If the structural changes have always been there, then that’s clearly important but we still don’t know if they represent an obstacle to improvement.

If the structural changes happen because of the condition, then we need to help patients understand that FND has changed their brain, but treatment can hopefully change it back again.
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Trish said:
A lot of that sounds like making stuff up.
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So neurologists shouldn't be caring for patients with poorly understood neurological conditions because of this?

I'm unsure how neurology rejects conditions based on his explanations of FND.
 
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livinglighter said:
So neurologists shouldn't be caring for patients with poorly understood neurological conditions because of this?

I'm unsure how neurology rejects conditions based on his explanations of FND.
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Sorry, I didn't make myself clear. I mean some of Stone's answers sound like he's trying to hang on to FND being psychological even if it turns out to involve neurological differences.
I certainly wasn't arguing for a lack of appropriate care.
 
Trish said:
Sorry, I didn't make myself clear. I mean some of Stone's answers sound like he's trying to hang on to FND being psychological even if it turns out to involve neurological differences.
I certainly wasn't arguing for a lack of appropriate care.
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Sorry. I didn't mean to insinuate you were arguing against a lack of appropriate care. I probably shouldn't have replied directly to your post.

Based on information from one of the main proponents, I've become perplexed at the relevance of the current understanding of FND.
 
livinglighter said:
Moved posts
Can anyone explain what Jon Stone is saying now about the structural changes found in the brains of pwFND?

https://neurosymptoms.org/en/faq-2/...-changes-to-the-structure-of-their-brain-too/

Can people with FND have changes to the structure of their brain too?


Why didn’t my MRI scan show these structural changes?


Why are the brains of people with FND structurally different?



So do these studies show that it should now be classified as a purely neurological disorder?


But it shouldn’t be called FND anymore right?


Shouldn’t doctors spend more time explaining these structural changes with patients?
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He is having a bet either way. He trying to cling on to the idea of conversion disorder and cbt and physio are treatments but if newer research indicated its biological then the fnd construct was rubbish and his whole world of fnd just crumbles so if he was serious he should say he got it all wrong and concede. But in eality he still wants to cling on the idea of conversion disorder even if he was proved wrong
 
Trish said:
I mean some of Stone's answers sound like he's trying to hang on to FND being psychological even if it turns out to involve neurological differences.
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What he has written there is basically saying, we know very little or nothing about any of this. And yet we're confident that FND exists and is about software despite obvious "hardware" changes, which we used to not think existed.
 
And what are these randomized clinical trials (plural) he's talking about? In his recent essay on FND past/present/future, he noted that only one big RCT--the CODES study--has been done. And what is the promise it showed? Patients say they feel better after CBT even though there is no reduction in episodes, and in fact those who don't get the CBT had greater reduction, although it was not statistically significant. as far as physio, retraining body parts might be helpful to patients whether or not their condition is FND.
 
Trish said:
Sorry, I didn't make myself clear. I mean some of Stone's answers sound like he's trying to hang on to FND being psychological even if it turns out to involve neurological differences.
I certainly wasn't arguing for a lack of appropriate care.
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"If the structural changes have always been there, then that’s clearly important but we still don’t know if they represent an obstacle to improvement.

If the structural changes happen because of the condition, then we need to help patients understand that FND has changed their brain, but treatment can hopefully change it back again."

Or worse just shifting to the tactic used for 'we didn't mean the mind caused it, just that it can fix it and is part of keeping it there, mind-body la la stuff' that they backtracked the CFS stuff to.
 
livinglighter said:
Moved posts
Can anyone explain what Jon Stone is saying now about the structural changes found in the brains of pwFND?

https://neurosymptoms.org/en/faq-2/...-changes-to-the-structure-of-their-brain-too/

Can people with FND have changes to the structure of their brain too?


Why didn’t my MRI scan show these structural changes?


Why are the brains of people with FND structurally different?



So do these studies show that it should now be classified as a purely neurological disorder?


But it shouldn’t be called FND anymore right?


Shouldn’t doctors spend more time explaining these structural changes with patients?
Click to expand...


  • "People with FND walking problems (Gait disorder) can sometimes find that they can’t walk normally, but they can run or walk backwards. This seems very strange but actually makes a lot of sense in terms of how we know the brain works."

I would be interested to check the veracity of this one. From the videos I've seen over time on here this gives the impression, perhaps falsely that someone could be hugely disabled and then 'run' backwards?

I can also see the temptation for one to get carried away in their examples, which could indeed be observations but also fallacial in his using them as linked or demonstrating his pet theories to begin perhaps exaggerating and saying run rather than walk - particularly if you might get the odd very mild patient who is also less disabled 'going fowards' and 'just about 'runs''.

The reason I pick this out is because whilst the issue seems to be that when it could be e.g. due to energy systems (I note this as an example because pwme would know about this) or all sorts of other systems outside his limited specialisms of known neurology 'for the organic' those like him with only ever consider one other department: pyschiatry, not even psychology. Yes they want to shove people off to CBT, but that doesn't mean they want to have the proper scientific subject looking at it either, just the clinical psych treatment.

I know they think saying 'blood-brain barrier' decades ago exempts them from having to 'pass back' and send for invesigaions to places like haeomotology or immunology or specialties that might look into other systems because they think drugs pass through less, and that their specialty covers nerves, but even they should know that is naive. Screw their fake dualistic that is a reverse accusation, they are basically treating their area and patients like an embalmed head you used to see in 80s science fiction comedies and films by that measure?

And the examples where 'the more you try' could also be interpreted as, like for many of us, the more you hammer at one muscle/actions the more tired and shaky it gets. e.g. lift things with my arms and I struggle with using those same muscles for hours. I'ts feasible in those situations that moving my arms 'backwards' would be easier than the bicep curling up again or whatever it is I'd used. So I don't get his allusion to 'the unconscious' which this is.

It also isn't 'the unconscious' there is automatic processing/actions programmed in (which psychology knows) anyway for all sorts of thigns we do like driving, which are hard to do if you then ask someone to remember each stage consciously and describe them when they've been just getting on with driving for 30yrs. SO that seems like trying to turn into a puzzle something that really isn't in that way too.

If only they could get themselves up to speed with real learning on real science then they might start to put together the structural bits and pattersn they might see and understand them correctly by being able to know these things and what they do and don't look like and how they would be well tested and ruled out (normally by testing actions that are almost similar, to 'subtract' the effect etc).

This nonsense of selling fake cures from therapies they neither do themselves nor know about is the really bad bit. Plasticity is known to be possible in the very young e.g. 7yrs old after a stroke where their brain rewires lost functions into different areas. But this is particularly know because they compared it to adults, and particularly older adults who had strokes. And plasticity just doesn't happen to that level then. SO it feels really misleading the way they use that term. They could at least just use the OT type (or other depts that actually do these activities) terms if they mean someone learning to pick up their toast differently/adapting their actions for certain lost functions. EDIT: That isn't actually 'plasticity' but learning to adapt activity to achieve a similar end whilst avoiding/accommodating the damaged area/part.

It is such a shame because there could be some really interesing headway here with the right neurospcyhologists and other areas funded to do proper science and working with other specialties. But all this just feels like it is about writing words to close it all down and pretend there is nothing to be curious about?
 
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bobbler said:
"If the structural changes have always been there, then that’s clearly important but we still don’t know if they represent an obstacle to improvement.

If the structural changes happen because of the condition, then we need to help patients understand that FND has changed their brain, but treatment can hopefully change it back again."

Or worse just shifting to the tactic used for 'we didn't mean the mind caused it, just that it can fix it and is part of keeping it there, mind-body la la stuff' that they backtracked the CFS stuff to.
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If the structural issues exist, they’re obviously important, but not important enough to interfere with curative CBT/GET succeeding, as shown in multiple RCTs that don’t exist.

This is the inevitable result of zero oversight. It’s not that clinicians read Stone and genuflect to his brilliance. They just send people they would rather not bother with down his path
 
dave30th said:
What he has written there is basically saying, we know very little or nothing about any of this. And yet we're confident that FND exists and is about software despite obvious "hardware" changes, which we used to not think existed.
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'hardware changes, which we used to not think existed, .... and indeed many of which probably don't exist because the imaging studies tend to be small, and the findings are unreplicated or even countered in subsequent studies and are contaminated by a great deal of bias in their interpretation.

Sounds like a mess because it is a mess. It's not so much the lack of knowing that I find so bad, but the pretence of knowing, on the basis of virtually nothing.

Charles B. said:
This is the inevitable result of zero oversight. It’s not that clinicians read Stone and genuflect to his brilliance. They just send people they would rather not bother with down his path
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Spot on.
 
I’m surprised he’s able to get away with having this website up and advertising his nonsense directly to patients. If this were a medicinal product not CBT he would have been shut down by the regulator already. There is no evidence for his claims. The CODES trial definitively showed that CBT doesn’t work.
 
dave30th said:
And what are these randomized clinical trials (plural) he's talking about?
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I don't think anyone else is aware of what he is referring to either. Could he be referring to the poorly understood medical conditions that he believes are FND? You would think trials as significant as he mentions would be appropriately referenced for patients' reassurance as clearly, he is trying to reinstall confidence.
 
livinglighter said:
Moved posts
Can anyone explain what Jon Stone is saying now about the structural changes found in the brains of pwFND?

https://neurosymptoms.org/en/faq-2/...-changes-to-the-structure-of-their-brain-too/

Can people with FND have changes to the structure of their brain too?


Why didn’t my MRI scan show these structural changes?


Why are the brains of people with FND structurally different?



So do these studies show that it should now be classified as a purely neurological disorder?


But it shouldn’t be called FND anymore right?


Shouldn’t doctors spend more time explaining these structural changes with patients?
Click to expand...
He's saying: heads I win, tails you lose. He's wrong, and that means he was always right.
 
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