Functional Neurological Disorders - discussion thread

Right so how do we protect young people from this? As they will and are filtering them from ME saying FND is a co morbidity and some cases taking cfs or ME away as a diagnosis? They have no science to back up as they still are calling this a theory? those new parent are jumping for joy at the diagnosis and are pushing young people back to school and then when they fail they are left stranded not knowing what is wrong and under threat and go underground out of fear.

 

Wowzers!
When did this happen?

 

"Is" that their entry for the competition to see how many ways the word "is" can be used in a single article?

 

rarediseases.org recommends https://www.neurosymptoms.org/en_GB/ which was set up in 2009 by
Professor Jon Stone who co-authored ,

in 2020, the chapter "Functional neurological symptom disorder (conversion disorder)" with Sharpe for the "New Oxford Textbook of Psychiatry"

in 2021, "Cognitive–behavioural therapy compared with standardised medical care for adults with dissociative non-epileptic seizures: the CODES RCT" with Chalder

in 2019 , "Predisposing Risk Factors for Functional Limb Weakness: A Case-Control Study" with Sharpe

 

This is a very important topic you raise @Tilly I find the small amount of patients on forums are more knowledgeable about what ME is and how it is often mistaken for FND, etc. But away from the forums, especially when the clinics direct you away from joining, many patients do not have a clue what their condition is. You also have to have a certain mindset to dispute the medical diagnosis of your child. Then you find yourself unsupported. Social services called upon you.....

This is all happening now despite changes to guidelines, as in practice medical professionals find ways, or are misdiagnosing ME as FND.

 

The crux.

All the pain put upon us.
All the “misunderstanding”.
All the killing.

 

This is where the research and directed research needs to be. It also needs to call out theories masquerading as facts. Making the public aware of PEM (a lot do already) will enable them to see the problems and as more young people are going through LongCovid, Lymes and PANS/PANDAS then we will be able to show the inconstancy of diagnosis and understanding. RESEARCH the differences between PEM Tics, gut and OCD

 

See the below link for which UK hospitals are diagnosing FND in their neurology departments:

https://www.fndaction.org.uk/specialist-care/

Very, very frightening.

I've been sitting on a neurology referral since 2016, when my GP agreed my symptoms merited one. I was thinking of going to to either Plymouth or Bristol, as they would have been the largest specialist centres near me. I am now having to rethink this plan and am really unsure what to do, since both hospitals are on the above list.


https://www.plymouthhospitals.nhs.uk/functional-neurological-disorder

https://www.nbt.nhs.uk/our-services/a-z-services/neuropsychiatry/functional-neurological-symptoms

https://www.nice.org.uk/guidance/qs...5-Functional-neurological-disorders-in-adults

https://www.nice.org.uk/guidance/ng127

Having an FND label slapped on a person with ME would be tantamount to a death sentence. I'm not sure how much the new NICE ME/CFS guidelines would protect against this, I don't think they even make a statement about ME/CFS being classified as a neurological disorder in ICD 10 or SNOMED.

 

Is David Strain, as the new medical advisor to Action for ME, aware of the dangers of FND as well as the lack of any scientific evidence for it?

 

The term FND is also included in SNOMED CT International Edition and national extensions under Synonyms terms to: Psychologic conversion disorder (disorder) which has the Parent:

Dissociative neurological symptom disorder (disorder)

[This term will have been added to SNOMED CT International Edition for consistency between SNOMED CT and ICD-11, to which SNOMED CT Concept codes are mapped.]

https://browser.ihtsdotools.org/?pe...edition=MAIN/2021-07-31&release=&languages=en





The Parent term, Dissociative neurological symptom disorder (disorder) has its own code:





So both the ICD-11 Concept Title term: Dissociative neurological symptom disorder and the term: Functional neurological disorder (ICD-11 Synonym term) can be coded for in SNOMED CT.

In SNOMED CT UK Edition, SCTID: 20734000 Functional neurological disorder is mapped to various ICD-10 F44.x codes in the SNOMED CT to ICD-10 Classification Map.

SCTID 735541006 Dissociative neurological symptom disorder is mapped to F44.9 Dissociative [conversion] disorder, unspecified in the SNOMED CT to ICD-10 Classification Map.

 

That typo did make me laugh though. The whole webpage reads likes it's been written by a school child.

 

A friend has been diagnosed with FND but regards it as a synonym for ME, so at least she is aware of a possible link, however presumably there are some people, presumably an increasing number, of people, who would fit an ME diagnosis receiving an FND diagnosis, but have no knowledge that ME even exists. So they do not even have an option of searching on line or contacting ME support groups.

How many people experiencing PEM will then as a result be steered away from any possibility of finding out that exercise based intervention is harmful and supposedly curative CBT inappropriate.

Increasingly I have read the claim that FND is not a diagnosis of exclusion, but rather a positive diagnosis based on clearly identifiable signs, though I have seen no unambiguous or uniquely identifying symptoms in what usually follows. This is particularly worrying, in that if clinicians believe they can make a definite diagnosis from just an initial consultation and case history, then the likely outcome is that formal testing does not happen so serious and potentially life threatening alternative diagnoses will be missed.

[added - as with MUS we will increasingly see diagnosis based on the clinicians prejudices and preconceptions, rather than objective data collection and scientific test.]

 

That FND is made on the basis of positive signs, rather than via exclusionary testing, is stated by the Plymouth service:

Of course, it doesn't specify what these 'positive signs and symptoms' are, or why they aren't signs or symptoms of another neurological disorder.

 

According to the NORD site (and Stone)

 

They have to have been doing something over the last two months to caffle out, as they did.

 

I was diagnosed with MS at one point and have friends with MS. BPS ideas are creeping in, mainly because of the stunning results of the PACE trial in treating fatigue. Rona Moss Morris is very involved ...

But the difference between an MS diagnosis and an ME diagnosis is vast. Society in general overestimates how severely disabled most MS patients are - on a night out, a friend's husband thought the patients must be helpers because he thought MS meant helpless in a wheelchair.

No on is ashamed to say they have MS; they do not have to worry the person they are talking to has just read of how researchers are frightened of them and special branch is keeping tabs on them the way we do.

They also have an unconscious sense of entitlement I would probably share if I had anything but ME. They feel they have the right to use a disabled toilet, to get medical treatment, to get aids and benefits.

It is also true to say they can be very badly treated by the benefits system, employers and the medical system but they have never been in the position we have where the money which Congress earmarked for ME research was diverted by the CDC to "serious diseases" to great approval.

 

In other words, patients have 'neurological signs' that don't fit other established neurological disorders (e.g. Parkinsons, stroke), well, supposedly at least. That now passes for a 'positive sign'.

 

This will be made easier by the way all the weird neurological symptoms of ME have been neglected for the thirty odd years since fatigue was made the main/ only symptom of CFS.

Neurology has always believed in Freudian theories as a way of looking into the brain. It has always been accepted that psychology could lead to neurological problems like the pseudocoma, the pseudostroke and pseudoepilepsy. FND is simply an attempt to make it scientific.

I fail to understand why something like a repeatable Hoover test shows a neurological symptom is a psychological disorder overriding a physical diagnosis but a positive cerebellar test somehow can't override a psychological diagnosis.

Myotonic dystrophy is confirmed by a genetic test. The standard practice is to test all family members when one person is found positive. Doctors treating the disease complain that they find other people with the faulty genes but who have never been properly diagnosed. They say that neurologists are terrible at recognising the disease yet Stone knows everything there is to know about movement disorders!

In the first FND paper in 2008 Michael Sharpe and him said movement disorders are difficult to diagnose so care must be taken before they are said to be FND but that has been forgotten now.

I find the presence of FND as a rare disease very strange and I think it is more a case that Stone is a persuasive talker than anything scientific. They may well come to regret it.

An ME activist, years ago now, was rediagnosed as having Behcet's Syndrome which was tragic as it can be managed but he had lost decades of life. It is also classed as a rare disease and many sufferers are told they have ME before they get a correct diagnosis so he contacted them. They were horrified at the thought of hoards of ME patients suddenly being told they had Behcet's as too many sufferers meant it would no longer be classed as a rare disease and they would lose out on special grants.

Yet they are willing to be associated with FND just as Stone is dragging every disease you can think of it its web.

 

Presumably if FND is a positive diagnosis, this implies that there is a significant continuity between its various manifestations. For example this might seem to imply that functional epileptic seizures are more closely related to functional leg weakness than say to epileptic seizures with an identified neurological focus.

However the supposed positive signs relate to the specific symptoms groupings and not to the condition overall. So if the symptoms of a functional hemiparesis relate to only someone with arm related symptoms and the symptoms of someone with functional epilepsy relate only to someone displaying seizures, why is it assumed that each of these distinct non overlapping set of symptoms are diagnostic of a single unitary condition.

So I would agree with @Simbindi that such diverse non overlapping symptom sets should not be regarded as positive signs for a single condition rather that there are a number of discrete symptom sets for which we currently do not understand what is going on.