Functional Neurological Disorders - discussion thread

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Dx Revision Watch said:
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.


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 is used in several different ways in WHO terminology systems and WHO 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 the 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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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.
 
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
 
Tilly said:
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.
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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.
 
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livinglighter said:
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.
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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

Functional Neurological Disorder at University Hospitals Plymouth NHS Trust

This webpage provides information for people with Functional Neurological Disorder and its symptoms, their carers
and their health professionals. We hope that you find it useful but please do let us know if there is anything else you
would like information about.


What is FND?
To help you understand the condition, we are going to break down its name:

FUNCTION: is how your body works
NEUROLOGICAL: is anything to do with your nerves and the messages they send to our brains
DISORDER: is when something doesn’t work as well as it should

So, to put it together, FND is a condition that affects your brain and causes your body not to function as it should.
Your brain receives millions of messages from the nerves around your body every single second. Sometimes our
brains can’t cope as well as it should with all of these messages, and we can start to experience neurological
symptoms. This is what FND is.

It is important to know that FND is not due to any brain damage or disease of your nervous system. FND is not
dangerous in itself, but people can injure themselves as a result of their symptoms. FND does not cause any damage
inside your brain or body.

FND can affect anyone. It often happens to people who are good at ‘putting up’ with difficult situations or stressful
events and can ‘carry on’ under pressure for a long time.

The exact prevalence of those diagnosed with FND is unknown however we know that FND does not discriminate. At
Derriford Hospital, FND symptoms are amongst the most common reasons why someone may be a Neurologist.

Symptoms
The symptoms that you may be experiencing are called Functional Neurological Symptoms (FNS). They are real and
genuine and can be debilitating to those experiencing them.

The most common symptoms are:

- Motor Dysfunction

  • Functional limb weakness / paralysis
  • Functional movement disorders including tremor, spasms (dystonia), jerky movements (myoclonus) and problems with walking (gait disorder)
  • Functional speech symptoms including whispering speech (dysphonia) and slurred or stuttering speech
- Sensory Dysfunction

  • Functional sensory disturbance includes altered sensation e.g. numbness, tingling or pain in the face, torso or limbs. This often occurs on one side of the body
  • Functional visual symptoms including loss of vision or double vision
- Episodes of Altered Awareness

  • Dissociative (non-epileptic) seizures, blackouts and faints. These symptoms can overlap and can look like epileptic seizures or faints (syncope).
Other physical and psychological symptoms are commonly experienced by patients with FND but may not be
present. These include:

  • Chronic pains
  • Bowel and bladder symptoms
  • Fatigue
  • Anxiety
  • Memory symptoms
  • Sleep problems
  • Depression

Referral and Diagnosis Process
FND symptoms are often thought to be something else at first, but a Neurologist or Neuropsychologist knows the
important differences to look for to make the FND diagnosis.

If you feel you, or someone that you know, may be experiencing symptoms of FND, you should get an appointment
to see your GP. If your GP agrees, you will be referred to a Neurologist.

It is important to know that although sometimes a diagnosis can be made quickly, it may be necessary to carry out
some tests that may take time.

People often feel uncomfortable or confused with the diagnosis of FND because they have not heard of it before or it
has taken a long time to get the diagnosis.

An FND diagnosis is made from positive signs and symptoms. It is not made because doctors cannot find another
diagnosis.

FND at Derriford Hospital
FND sits at the interface between Neurology and Psychology.

There is no medical treatment for FND because it is not caused by disease or damage to the nervous system.
Research suggests that people who experience FND can benefit from psychological or physical therapy to help with
their symptoms, in the right circumstances.

Once referred by your GP, you will see one of our Neurologists and Neuropsychologists in our joint FNS clinic.

Treatment is currently made up on three stages:

  1. Information: Learning about what FND is and how it happens
  2. Stabilising: Strategies to control symptoms and reduce episodes
  3. Support making changes: Find new ways to manage stressful situations and patterns of coping that prevent FND returning in future – usually with an outpatient psychological therapist.
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https://www.nbt.nhs.uk/our-services/a-z-services/neuropsychiatry/functional-neurological-symptoms

Functional Neurological Symptoms at North Bristol

Functional neurological symptoms are neurological symptoms that are genuine, but not due to a disease of the nervous system.

They are called functional symptoms because they affect the “function” of the body rather than being caused by damage to the “structure”.

This problem has been around for a long time, for most of history it was called “hysteria”, though it is common in men as well as women. More recently, psychiatrists called it “conversion disorder” because patients were thought to be “converting” stress into physical symptoms.

However not all patients experience significant psychological problems. A lot of patients just have an accident or a period of illness and then get functional symptoms afterwards.

Symptoms can include:

  • Loss of motor control
  • Sensory symptoms
  • Speech problems
  • Attacks or seizures
  • Visual symptoms
  • Cognitive problems
These symptoms are common, affecting around a third of people attending neurology outpatient clinics.
They can resolve quickly and of their own accord, and sometimes a clear, reassuring explanation and some time is all a patient needs to get better.

The following websites have a lot of very useful information:
www.neurosymptoms.org
www.nonepilepticattacks.info

When symptoms become more chronic they can cause a lot of problems, with a third of affected patients not being able to work. Patients are often very distressed by their symptoms. In this case we tend to diagnose “Functional Neurological Symptoms Disorder” (FND).

When patients are affected by FND they can benefit from specialist help including physiotherapy and psychological therapy.

At the Rosa Burden Centre we have psychiatrists, therapists and nurses with lots of experience working with patients with these symptoms.

We have an outpatient clinic in which we carry out assessments and provide guidance. We provide outpatient psychological treatment (CBT) for suitable patients.

For patients who have tried all the other available treatment and are still very affected by their symptoms we have a three week inpatient rehabilitation program:

Our inpatient program is “multidisciplinary” meaning it involves assessment and treatment from professionals with different expertise:

  • Nursing staff trained in physical and mental health
  • Psychological therapy
  • Physiotherapy
  • Occupational therapy
  • Psychiatry
Through 1:1 assessments with different professionals, and weekly team meetings involving the patients, we aim to get a good understanding of your symptoms, how they affect you and how you understand them.

Part of the assessment involves us getting to understand you as an individual, because these symptoms are complex and can be affected by lots of different aspects of a person’s history. We will challenge you to try different techniques and learn new skills, to enable you to manage your symptoms more effectively.

Part of the assessment involves us getting to understand you as an individual, because these symptoms are complex and can be affected by lots of different aspects of a person’s history. We will challenge you to try different techniques and learn new skills, to enable you to manage your symptoms more effectively. By the time the three weeks are over we hope that your symptoms will have improved, your ability to manage the activities of daily life will have improved, and you will have confidence that you can continue to recover at home.
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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.
 
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Dx Revision Watch said:
...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.
Click to expand...


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


fnd-snomed-ct.png



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


fnd-snomed-ct.png



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.
 
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The exact prevalence of those diagnosed with FND is unknown however we know that FND does not discriminate. At
Derriford Hospital, FND symptoms are amongst the most common reasons why someone may be a Neurologist.
Click to expand...

That typo did make me laugh though. The whole webpage reads likes it's been written by a school child.
 
livinglighter said:
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.
Click to expand...

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.]
 
Peter Trewhitt said:
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.
]
Click to expand...

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

FND symptoms are often thought to be something else at first, but a Neurologist or Neuropsychologist knows the
important differences to look for to make the FND diagnosis.

People often feel uncomfortable or confused with the diagnosis of FND because they have not heard of it before or it
has taken a long time to get the diagnosis.

An FND diagnosis is made from positive signs and symptoms. It is not made because doctors cannot find another
diagnosis.
Click to expand...

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.
 
They could get around losing control of the ME/CFS diagnostic category by

1. Changing an ME/CFS diagnosis to FND.

2. Diagnosing new patients as FND in the first place, simply bypassing ME/CFS completely and never having that diagnosis recorded on the patient's notes.

3. Adding an FND diagnosis to an existing ME/CFS diagnosis.
 
Simbindi said:
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.
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According to the NORD site (and Stone)

Diagnosis
FND is diagnosed on the basis of positive physical signs, and usually requires a neurologist or a doctor familiar with neurological diagnosis. Some examples of these signs are:

• Hoover’s test is for of functional leg weakness – the patient may have difficulty pushing their “bad” leg down (hip extension), but when they are asked to lift up their “good” leg, movement in the “bad” leg returns transiently to normal.
• The tremor entrainment test for functional tremor – this is when the shaking of an arm or leg becomes momentarily better when the person concentrates on copying a movement that the examiner makes.
• Dissociative (non-epileptic) seizures can often be recognised by a trained health professional using a combination of typical features such as: an episode of violent limb thrashing in which the eyes remain closed, side-to-side head movements, or an event lasting longer than 5 minutes where the eyes are closed, hyperventilation during a shaking attack or tearfulness on recovery.
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Ash said:
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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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.
 
Sean said:
They could get around losing control of the ME/CFS diagnostic category by

1. Changing an ME/CFS diagnosis to FND.

2. Diagnosing new patients as FND in the first place, simply bypassing ME/CFS completely and never having that diagnosis recorded on the patient's notes.

3. Adding an FND diagnosis to an existing ME/CFS diagnosis.
Click to expand...

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.
 
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