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

Yes, for now the ideal long Covid service would be based around —

1. Confirming the diagnosis and educating patient and family
2. Advising on symptom management and preventing deterioration
3. Advising on supports for living with the condition
4. Facilitating social and employment supports (this needs to be made as simple as possible - almost one-button triggering)
5. Maintaining tight coupling with research teams, to allow a two-way translation of new data. The patients access promising new diagnostic and therapeutic options early, while providing the evidence for their validity with well-captured follow-up

 

The list looks good but I think longitudinal needs to be thought out - on basis it is likely to operate like ME/CFS of ups and downs in severity and support changes really being needed at those points.

What is the model (if you take out the 'there isn't a cure' - which the more I say it the more it reminds me, illogically perhaps, of the 'it's a puppet' Brian Conley line:

https://www.youtube.com/watch?v=iZf7o5_Z_dg

) or 'standard' for any other condition that can have the full breadth of severities that ME/CFS has (and long covid might also)?

These might follow different waxes or wanes than say the different types of arthritis or lupus or cancer or whatever but I think there are lessons and aspects for the different possible ME/CFS scenarios to be learned from all of these.

I also think we need to begin underlining and anchoring to such standards and asking questions why 'less' and 'not' if the package deviates significantly. And a focus on the prognosis issues and misinformation seems to be needed to debunk 'recovery' nonsense that has misled planning

I find it outrageous they can call it compliant with being 'patient-centred' when instead of having a service that has check-ups and can make appointments more closely when there are health downward drifts or issues, they separated by severity. And that they don't prevent anything with the service they offer for mild/moderate or particularly focus on adjustments and support that would stop people getting bad. Then have nothing and no access at severe. I just don't know what goes on in people's heads to have the call to call it care or a service. It's like any of the illnesses above discharging and closing their doors to anyone who has it seriously or severely - come back when it's mild, like you'll sort that transformation yourself but really benefit from a non-expert's advice once you are mild (?!).

And for the people running the slapdash ill-informed normally short courses to think they've experience and knowledge on the condition to input into developing one. What do they think the 'touchpoints for care' in such a condition really are going to need to be? What does them seeing someone 4 times often one-way when they first get ill, then never again, give them as special knowledge compared to anyone else out in the world? Teach them to fly and they will be fine for something that is more about 'events' leading to changes in status.

I say this not to vent, but to note that as long as it isn't lifelong (if condition is), based around being able to be reactive and swift in offering appointments when significant deterioration happens and more support/letters needed, and one where it is a medic interested in learning as well as offering 'expertise', and services that step-up when there are changes in status

 

Merged thread

Video description;

"They are common.
They can be disabling.
They are not well understood.
Patients face long waiting times.
Patients may face hostile attitudes.

FND."

I haven't watched this but posting for those who might be interested.

 

YouTube now thinks I am interested in these videos...

Video: Stewarts Soundbites Ep33 – Functional neurological disorder

"Professor Jon Stone, Consultant Neurologist discuss the fascinating and important topic of functional neurological disorder (FND). FND and functional symptoms are surprisingly common but can be complex to diagnose and manage. Professor Stone explains what FND is, its main symptoms and causes and how it can be diagnosed. Professor Stone explores the interplay between FND and other disorders and discuss the prognosis and recovery for those affected."

 

Video: Prof Jon Stone - Functional Neurological Disorder & MS - looking for a treatable cause of disability

13 Sept 2021 Professor Jon Stone - Functional Neurological Disorder (FND) and MS - looking for a treatable cause of disability

 

Defining FND - "tough one", "A disorder of voluntary sensors and motor function"

FND as a name is the patients choice. That it is a mix of Psychological and brain function, the example given is from childhood trauma as the cause.

Appealing to 2000 years of descriptions of FND.
Lots of talk of potential history noxious gases etc etc.
In the 1960s Neurology couldn't diagnose this conditions accurately and threw the concept away. This talk considers this a wrong turn and Psychiatry is just fine really and it was a lack of interest in understanding.
Its a crossover over brain and mind.

Money. Second most common reason people see Neurologists, after migraine. Accounts for 30% of seizures. Cost must therefore be huge.
These are often not transient and disabling in the long term and are being ignoring.

Still don't know what is causing it. BPS mentioned as a potential cause. They know that people with FND look different on brain scans than people pretending. More activity in agency circuits. Abnormal connections emotional and limpic system. Aberrant connections being made. Areas of under-activity in Thalamus. If you see improvements in this activity then the patient improves.

Trauma and stress more common in FND patients. 15% don't report trauma. A lot of the data is poor. But its OK because often the traumas are quite mild and we should be cautious about reading too much into that 15%. They do acknowledge that in young people continuously searching for such trauma often causes its own trauma, where trauma is present however they know but don't want to talk about it but rather the fact their arm doesn't work. Nothing explains why abuse 20 years earlier can result on that particular day a symptom appearing. Trauma is not the answer to everything on how the brain works.

Unnecessary drugs, clinical investigation often misses things and ultimately ends up subjective.
We don't have any reliable biomarkers. If you use things like Lactate you end up with a diagnosis of exclusion, FND should not be treated as an exclusion diagnosis. Should be able to positively identify a functional tremor and extend that to things like paralysis.

Team work. Apparently no patients have seizures just 7 days after CBT with equally long term benefits. However the randomised control trial showed less but "significant" benefits.
Psychological therapies. CBT model based on avoidance but doesn't help seizures. We don't know CBT works. Lots of evidence suggesting Physio helpful and multidisciplinary therapy looks very promising. With FND there is undo attention paid to the dysfunctional limb so they build a physio model towards other areas. Psychological informed physio is a model. The results look very very promising. CBT tends to oversell itself, its not the only mechanism.

No one medication to treat FND. LSD helped a patient who lost use of 3 limbs some time back.
Psychedelics didn't seem to help in the Psychiatrists view. Aviactrin (Sp?) deals with repetitive circuit dysfunctions and it can disrupt that process. SSRIs might be helpful, cyclic anti depressents also. Keeping people away from harm like opiates is important, have patients manage pain in a more appropriate manner.

Covid. Persistent Long Covid sufferers. FND and Covid 19 vaccination go together.
Expecting many Long Haulers to get FND diagnosis. Lots of functional disorders. Expect Strokes, Alzheimers and vascular damage from all the inflammation also but the rest is Functional. Those with community based symptoms where their Covid wasn't bad they all appear to be FND including things like Postural dizziness. Large cohort of dysfunctional breathing people and functional disorders. Worry is people aren't looking at these with positive criteria to make the diagnosis and will be lost in the mix.
Viral illnesses are one of the commonest causes for functional disorders so of course Covid19 will be a big cause, there is with every other inflectional disease.

FND patients are not happy. MS patients get significantly better care.
Disease apartheid - Get something on a scan you get one approach and otherwise you are doubt of any condition at all. Distortion of priorities in elevating some patients and dismissing others. What would help was evidence of treatment and evidence of biology.

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I haven't split out the notes based on the neurologist verses the Psychiatrist but they are clearly coming at it totally differently. The Psychiatrist is seeing it everywhere and beleives Psychiatry and physiotherapy can treat it. Whereas the Neurologist is seeing a type of Brain damage that is resulting in functional problems and doesn't have a treatment or even a good diagnostic yet.

This is a horrifying thing to watch really, they have no evidence for this nor have they found any treatments that work.

 

All ducks and no goose.

One fascinating thing is how medical pseudoscience in the 21st century is unchanged from any previous time period. The only thing that changed is everything else, the space where this quackery is applied keeps getting smaller and smaller, but everything else is locked in time.

The complete lack of self-consistency is blatant. Very few physicians were skeptical of the Humors at the time. Experts don't do any better than amateurs at this, they're only as good as the overall state of knowledge with the validation of their peers, scientific knowledge is a social construct, what's accepted as true and what's true are not the same thing. They don't know what they don't know, and they don't know that either.

 

I come across this article


Goes through the history of FND but basically I think it's a advert really with lots of unproven theories

 

When a person attempts to convince me of an idea, and goes back a hundred years to quote some authority, the effect is not persuasive. It makes me ask where the evidence from today is. After all a hundred years have passed, which should be more than enough.

I'm not doubting that people are ill. I just don't find the FND idea a credible idea and find it sad that quacks are exploiting patients who are desperate and probably see no alternative but to go along with it in the hopes it might help.

 

The article seems weird
1 why quote something from 100 years ago when science was way behind what it is today.
2 Hysteria seems to be an ignorance of what may come ahead. Many diseases where once considered hysteria have now have a biological basis.
3 fnd/conversion disorder is still ignorance because there may come a time when a biological basis and technology can be advanced so as to find out why these disorders exist
4 fnd theoretical backing seems like pseudo-science especially some of the rule in signs like hoovers
5 why is it classed as a mental illness and in the dsm when it's unknown
6 Treatments are not based on theory and seem like alternative medicine

 

This Twitter account is unprecedented in its popularity, unsurprisingly, amongst BPS practitioners. Whenever I encounter it, my heart sinks.

I’ve found that many in the FND orbit castigate ME clinicians, patients, etc for espousing their allegedly uninformed opinions on FND. This doesn’t stop FND adjacent folks from opining on the pathology, or lack thereof, for ME.

 

It's like a advert and promotion for fnd but underneath it lacks any sense and scientific basis

 

Aren't neurological diseases some of the hardest diseases to be diagnosed.

FND is a way for the lazy doctor when given limited time, resources infalible technology.

 

Maybe neurologists are gullible to pyschiatry and their pseudo-science psychosomatic disorders.
They should grow a backbone and do some good research to look for biological causes and what follows would be a treatment based on the causes

 

I once raised the issue of neurologists treating ME as though it is not physical with a ME expert and was told it is common for "neurologists not to like conditions they cannot see." Sometimes abnormalities such as encephalopathy are not visible on MRI, which might make a majority of them want to opt for a somatic explanation for the patient's symptoms instead.

 

A question...

I know that neurologists are not all neurosurgeons. But are all neurosurgeons also neurologists?

 

A recent and very relevant phrase that is about politics so will not specify but really sums up the same thing:

I've been thinking lately of the value of putting this out as a challenge to the ideologues: that LC is the definitive test of their model. Only problem with that is that I don't think it'd make any difference, as we know with PACE being presented as such. No evidence is ever accepted, it's all about how popular those ideas are.

Since the ideologues are insisting that LC is also psychosomatic, with the same cheap excuses they used with us, if they're wrong then this is it, they stop making those assertions, they have to accept that they were wrong about it and simply say it about anything and that illusion was maintained strictly through manipulation, control and coercion.

It's just sad that I know it wouldn't even matter. As we've seen with people who hold an ideological position, being proven wrong only reinforces their beliefs. Even decades after it will all have been invalidated, there will still be hardcore believers, being the last great belief system that is socially acceptable everywhere.

Peptic ulcers should have been the last of it. Without Marshall's evidence, they would still be in the list of BPS constructs. Instead the golden age of this snake oil happened after. Absurd.