Functional Neurological Disorders - discussion thread

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large donner said:
Yes true but whats the starting point.
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I suspect it was a group of blokes sitting round a table and making it up as they went along. Based on consensus/committee rather than scientific evidence.

Presumably, the idea was that it would develop and adapt as new information came to light.

Then you have people.....empire building, self interest .....
 
Peter Trewhitt said:
The FND advocates are getting big on the idea of lots of different unambiguously diagnosed biomedical conditions having an FND component, including stroke and Parkinson’s Disease that I can recollect of the top of my head.
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This is absolutely terrifying, isn't it? Now anyone can be accused of having "functional overlay", and sent off for reeducation.

SO helpful, to have a 30-something fit, educated, healthy clinician explain to you how you need to think more positively about your incapacitating - and very possibly ultimately fatal - neurological illness.

I'm finding this cropping up in my own area, which is neuropsychology. I get a lot of questions from clinical neuropsychologists about head injury and concussion, and whether these patients' problems might be partly or wholly due to anxiety, depression or "central sensitisation".
 
Woolie said:
I'm finding this cropping up in my own area, which is neuropsychology. I get a lot of questions from clinical neuropsychologists about head injury and concussion, and whether these patients' problems might be partly or wholly due to anxiety, depression or "central sensitisation
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Anxiety, depression and CSS comes up quite a bit as it relates to Long-Covid in my area unfortunately.
 
Woolie said:
This is absolutely terrifying, isn't it? Now anyone can be accused of having "functional overlay", and sent off for reeducation.

SO helpful, to have a 30-something fit, educated, healthy clinician explain to you how you need to think more positively about your incapacitating - and very possibly ultimately fatal - neurological illness.

I'm finding this cropping up in my own area, which is neuropsychology. I get a lot of questions from clinical neuropsychologists about head injury and concussion, and whether these patients' problems might be partly or wholly due to anxiety, depression or "central sensitisation".
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Makes clear the necessity of joint action.

Essential to form a unified movement of ALL the ill ones.

Why I believe we should (almost) never compare our illness to that of others in a covetous way.

Where treatment of another illness is presumed good at least in comparison.

This misunderstands why we are where we are.

We will not be cared for or treated by fighting over grossly inadequate support(?) provided to those with MS Brain Injury Parkinson’s etc.

Yes, we are worse off regarding ‘recognition’. But each illness was put through prolonged periods of unnecessary resistance to the acknowledgment of its existence. Or the material nature of this.

We with ME experience the brand of discrimination currently mostly allocated to those with ‘mental health conditions’.

Unfortunately there is plenty enough discrimination to go around. Escape is impossible.

Most currently presumed ‘physical’ illnesses were treated as badly most currently presumed ‘mental’ illnesses until very recently.

Progress is not irreversible.


Solidarity with all of us ill, is the only way out.

Break the system and build a new one.

We never rooted out a moral judgment on the sick. The Judgment is in good condition. Ready to be picked up in service of someone’s self interest. Bringing an early death for many millions of others.
 
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livinglighter said:
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That doesn't help when it is the consultants switching the diagnosis.
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FND is now listed on the Rare Diseases so here we go again. I don't think they have a code for it or listed on the NICE guidelines does it? If I am correct how can it then be listed on the Rare Diseases?
 
Tilly said:
FND is now listed on the Rare Diseases so here we go again. I don't think they have a code for it or listed on the NICE guidelines does it? If I am correct how can it then be listed on the Rare Diseases?
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Is "FND" actually accepted by most mainstream medical practitioners as a legitimate illness or phenomenon? Or do they just think "ah, not my problem" and have a structure to be able to move on to the next patient/item/etc and don't really think about whether it's legitimate? Have they even heard of it? Seems to have spread as an idea fairly recently to me.
 
Tilly said:
FND is now listed on the Rare Diseases so here we go again. I don't think they have a code for it or listed on the NICE guidelines does it? If I am correct how can it then be listed on the Rare Diseases?
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It seems very odd. Do you have a link to where it is registered as a rare disease?
 
Ariel said:
Is "FND" actually accepted by most mainstream medical practitioners as a legitimate illness or phenomenon? Or do they just think "ah, not my problem" and have a structure to be able to move on to the next patient/item/etc and don't really think about whether it's legitimate? Have they even heard of it? Seems to have spread as an idea fairly recently to me.
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They seem to accept it. Suffolk, Cambridge filters all those with perplexing presentations such as POTS, ME, cfs, mast cell, EDS etc there. they dont do any testing apart from standard blood tests which they seem to not look at? They have even denied on at least one occasion that someone which show lesions of MS didn't have enough to warrant a diagnosis of MS and one young person apparently while they tested reflexes that did not respond that they could control them by defiance. The young person has been thought to have Flaccid Paralysis as well as severe ME. Gps have been dismissed from practice because they support the Flaccid Paralysis and others keep saying sorry when they try to get the mother on FII.
 
Tilly said:
FND is now listed on the Rare Diseases so here we go again. I don't think they have a code for it or listed on the NICE guidelines does it? If I am correct how can it then be listed on the Rare Diseases?
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FND is a more recent term being used in clinical practice (and promoted by Stone et al) for ICD-10's existing

F44.x Dissociative [conversion] disorders

category block:

https://icd.who.int/browse10/2019/en#/F44


For ICD-11, the term

6B60 Dissociative neurological symptom disorder

is being used (with the DSM-5 term: Functional neurological symptom disorder under Synonyms, along with Functional neurological disorders; and Conversion disorder):

https://icd.who.int/dev11/f/en#/http://id.who.int/icd/entity/1069443471


The WHO prefers not to incorporate the word "Functional" into new terminology since the word has several different meanings across WHO terminology systems and publications, including in the International Classification of Functioning, Disability and Health, known more commonly as the "ICF".

The WHO would not drop the "Dissociative" word for ICD-11 despite heavy lobbying by Stone, Shakir et al. The WHO's position was to keep Dissociative neurological symptom disorder primary parented in the Mental, behavioural and neurodevelopmental disorders chapter, with a concession to Stone, Shakir et al, of secondary parenting under the neurology chapter.

FND can be coded for under both ICD-10, ICD-11 and DSM-5.

I don't think there is a specific NICE guideline for FND but some FND advocacy groups have lobbied for one.
 
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Ariel said:
Is "FND" actually accepted by most mainstream medical practitioners as a legitimate illness or phenomenon? Or do they just think "ah, not my problem" and have a structure to be able to move on to the next patient/item/etc and don't really think about whether it's legitimate? Have they even heard of it? Seems to have spread as an idea fairly recently to me.
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You might find this useful to listen to how he feeds into our part knowledge. He does not seem to explain the damage and how it impacts of movement
What Is FND - FND Hope International
 
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