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

[Andy]

This thread is for discussion about the concept of Functional Neurological Disorder, and of articles and social media posts on the topic that don't warrant their own thread.
Note - there is another thread on this topic here which has now been closed.

As the title suggests, this thread is for articles that are about, or some might say promoting, FND that don't warrant their own thread.

 

[Andy]

"A Quest for Clarity

Functional neurological disorder (FND) is a disorder of the functioning of the nervous system that involves a problem with the way the brain sends and receives signals – yet for far too long the condition has been cloaked in mystery and misunderstanding. To help us wade through the complexity, Tom Plender, as a musician and FND patient, shares his journey to the outer reaches of neurology, and why FND is the most common condition you have never heard of."

Internet archive link, https://web.archive.org/web/20211212110016/http://nihealthcare.com/a-quest-for-clarity/

Also features Mark Edwards. The web page might ask if you are a health professional or not, I've found I could continue reading just by closing the pop-up, rather than answering the question.

 

[Ariel]

*Creates confusion and chaos*

"Let me help you out of this mess!"

 

[rvallee]

Not really an article but it's going to be wild seeing in the next few years FND advocates explaining that FND is not a mental disorder while giddily pointing out that it's in the DSM. And insisting that it's not the same as conversion disorder even as they explain it exactly like this, and continue publishing papers that explicitly state that fact.

A model of reality where people are guilty until proven innocent of thinking wrong, as a result condemning millions to needless and unusually cruel suffering is basically almost too much for a plot about a dystopian nightmare. You couldn't make this up as a narrative, only real life ever gets this insane.

 

[Jonathan Edwards]

It's nice to hear that this isn't conversion after trauma any more - although last time we had something on this it seemed to just have changed the names.

The attempts at scientific explanation do not look very coherent to me. I was intrigued by the comment - brain scans of FND patients appear to demonstrate that conscious parts of the brain have become over-involved in movement. - because nobody knows which parts of the brain are conscious, if that is the right way to put it. If they are, then of course Descartes was right (as he probably was) in that there is some sort of soul process going on there as well as just 'stuff'.

It is also nice to hear that the author has got better.
And his illness almost sounds more like ME than FND but who knows?

 

[dave30th]

it also misrepresents the prevalence of FND. they keep saying it's a third of neurological consultations. In fact, Stone et al have been insistent for years that FND is no longer a category of exclusion but a rule-in diagnosis using "positive signs." Yet when FND is diagnosed through these positive signs, Stone and his colleagues reported that only 5.5% of neurology consultations were FND--not a third. The third makes up all those they can't figure out but are NOT FND cases that have diagnosed by rule-in positive signs.

So the FND folks want it both ways. they want to claim it makes up a third of consultations. They also want to insist that it is a rule-in diagnosis, which make up only 5.5%. If it is rule-in, they should stop with this inflated claim of how prevalent is. If all they mean is, something we can't identify as a known neurological disorder, then it is not a rule-in category. It's double-talk.

 

[Jonathan Edwards]

they can't figure out but are NOT FND cases

yup

I did some specialist training in neurology, although I didn't become a neurologist. I had quite a few people whose symptoms we're hard to explain but I don't recall a new patient with 'FND' in six months of doing my own clinic. I know what they mean by FND and have looked after people with the problem but it is not that common. The 'FND folks' probably see 5.5% because they are known to be FND folks. I suspect for a routine neurology clinic it is even less.

 

[dave30th]

The 'FND folks' probably see 5.5% because they are known to be FND folks. I suspect for a routine neurology clinic it is even less.

But they're still claiming it as a third, and also sometimes a 16% figure is cited (in their calculations, the 16% figure makes it the 2nd most common diagnoses after migraines), which they say includes "rule-in" cases plus those with other psychological issues. So they seem to have three different prevalence rates, all from the same Scottish neurological survey, that are cited as prevalence at different times. The discrepancies are confusing. "A Prevalence for All Seasons."

 

[Lilas]

In the introduction to " Somatic Symptom and Related Disorders " (which includes FND) from DSM-V reads:

" However, medically unexplained symptoms remain a key feature in conversion disorder and pseudocyesis (other specified somatic symptom and related disorder) because it is possible to demonstrate definitively in such disorders that the symptoms are not consistent with medical pathophysiology. "

I know that for the diagnosis of FND, the DSM-V cites ways to "eliminate" any possibility of neurological disorder as follows but...:

" There must be clinical findings that show clear evidence of incompatibility with neurological disease. Internal inconsistency at examination is one way to demonstrate incompatibility (i.e., demonstrating that physical signs elicited through one examination method are no longer positive when tested a different way). Examples of such examination findings include

• Hoover’s sign, in which weakness of hip extension returns to normal strength with contralateral hip flexion against resistance.
• Marked weakness of ankle plantar-flexion when tested on the bed in an individual who is able to walk on tiptoes;
• Positive findings on the tremor entrainment test. On this test, a unilateral tremor may be identified as functional if the tremor changes when the individual is distracted away from it. This may be observed if the individual is asked to copy the examiner in making a rhythmical movement with their unaffected hand and this causes the functional tremor to change such that it copies or “entrains” to the rhythm of the unaffected hand or the functional tremor is suppressed, or no longer makes a simple rhythmical movement.
• In attacks resembling epilepsy or syncope (“psychogenic” non-epileptic attacks), the occurrence of closed eyes with resistance to opening or a normal simultaneous electroencephalogram (although this alone does not exclude all forms of epilepsy or syncope).
• For visual symptoms, a tubular visual field (i.e., tunnel vision) "


But, is this sufficient to affirm that it is necessarily a mental health problem ? I have doubts. There are and always will be little known and poorly understood diseases that could meet FND criteria, right ?

 

[rvallee]

So the FND folks want it both ways. they want to claim it makes up a third of consultations. They also want to insist that it is a rule-in diagnosis, which make up only 5.5%. If it is rule-in, they should stop with this inflated claim of how prevalent is. If all they mean is, something we can't identify as a known neurological disorder, then it is not a rule-in category. It's double-talk.

Unfortunately, they are allowed to this, and apparently health care systems are so horny about this stuff they can't resist it.

So although there is a lot to blame these folks with, what the hell is wrong with a medical system that loves and promotes blatant quackery? The problems are really far more widespread and distributed than some people seem to think. This is not limited to the BPS ideology in general, the rest of medicine is either in awe of this or doesn't mind it, will defend it endlessly. When you find GPs gushing over LP, it isn't like finding a few cracks in the system, it's deep rot that's seeped everywhere and is slowly turning the foundations into mush.

But medicine is fully self-regulated, only people trained and working in its system will ever be the ones to hold other people in that system accountable. It has no ability to see when it's wrong itself, criticism from anyone outside the system is immediately dismissed in frustration as "doctor bashing". Hell even people within that system are accused of that if they don't toe the company line, even if indirectly.

We are truly in a "who will police the police" scenario. Except by comparison it's easy to take on corrupt law enforcement, it succeeded many times in the past, whereas the psychosomatic ideology has never faced any accountability, even for its documented failures.

 

[Mithriel]

I am dubious about the positive signs. If there are consistent neurological signs, that says nothing about why they are happening and certainly does not prove they are caused by psychological processes.

A book on diagnosis says that the Hoover sign can give a positive result in MS because the patient is trying to help, something like that.

Epileptic fits cause muscle contractions so why should the eyelid muscles contracting rule out a physical cause of epilepsy?

They keep using the plasticity of the brain to prove their theories of FND but if someone has an ankle problem the body could have compensated so they could still walk on tip toes since that uses a movement part of the normal stride. That compensation may not include the sort of ankle test being done.

I am not saying these are the explanations, just that they have not shown their explanation is the only one.

Everything in the body starts in the brain but there can be damage to the message right up to the final movement. Years ago I read a snippet in the New Scientist where they had tested a woman with hysterical paralysis and found the place where the signal did not cross.

All these signs only indicate FND because they say that thye do. These are not things that are part of a sequence from a disease process. You have a bleeding stomach ulcer which gives you pain in a certain place, anaemia and black stools or high thyroid test, tremor, loss of weight, restlessness, irritability.

 

[ems223]

I just stumbled across this forum, and the misinformed idea that a diagnosis found in the DSM-5 implies that it is a "psychological process" is driving me crazy, so I have to comment. I am a clinical neuropsychologist and I specialize in neurodegenerative diseases (i.e., progressive neurological conditions that can cause dementia, including Alzheimer's disease, Parkinson's disease, and everything in between). Just because a diagnosis is found in the DSM-5 does NOT mean that it is caused by psychological factors or that you can somehow talk yourself out of it. That's absurd. Do you think that anyone with Alzheimer's dementia, dementia with Lewy bodies, Parkinson's disease dementia, etc., etc., etc. is offended because their diagnoses are also found in the DSM? NO, they are not. If a DSM diagnosis = one that is "caused by psychological processes," then that would obviously be great news for those folks.

To make it into the DSM, a disorder only has to INVOLVE mental, behavioral, cognitive, or psychological factors. They may be the cause OR the effect (case in point - the diagnosis of "personality change due to another medical condition."

@rvallee @Mithriel

 

[Trish]

Hi @ems223, welcome to the forum. Thank you for explaining about DSM-5 and what sort of conditions it covers.

I don't know what you know about ME/CFS and our particular problems with a group of psychiatrists who over the last 30 years have hijacked research and treatment in the UK and many other countries, classifying ME/CFS wrongly as a psychosomatic condition, trying to get it included under neurasthenia, or alternatively as FND, and therefore in DSM and other coding as a psychiatric condition.

I am interested that you say:

To make it into the DSM, a disorder only has to INVOLVE mental, behavioral, cognitive, or psychological factors. They may be the cause OR the effect (case in point - the diagnosis of "personality change due to another medical condition."

On that basis it would seem that ME/CFS could be in DSM because it involves cognitive fatiguability and dysfunction affecting factors such as reaction times and concentration. However this is not progressive or neurodegenerative and for some of us mainly manifests as cognitive fatiguability. In other words cognition has not fundamentally changed, but cognitive activity can only be maintained for short periods with rests in between.

I think you need to understand the immeasurable harm the wrong classification of ME/CFS as psychosomatic has done to people's health and treatment by clinicians and the wider community to see why we are so anti any suggestion that ME/CFS could in any way belong in a classification of disorders with a mental health component.

 

[Jonathan Edwards]

I just stumbled across this forum, and the misinformed idea that a diagnosis found in the DSM-5 implies that it is a "psychological process" is driving me crazy, so I have to comment.

I think the arguments being made are more nuanced than that to be honest @ems223.
To be in DSM-5 I guess that a movement disorder has to be more than just having some abnormal movements. Parkinson's also has cognitive changes but that is a different issue. For FND to be in DSM there has to be some other reason because there are no overt cognitive changes.

The problem as I see it is not that the idea is that FND is due to some unknown cortical or telencephalic mechanism which is one way it is advertised, by people like Mark Edwards and Jon Stone. The problem is that at the same time it seems that it is expected to respond to the same old CBT approach used for 'conversion disorder' that implies that someone the problem can be addressed by training the 'mind'. I am not saying that that cannot be the case. It might be, but we need some evidence. People here are interested to a large degree because the evidence for CBT for ME has been so poor and now that that has been recognised by NICE there is a threat that people with ME will be re-routed to the same unproven treatments via a diagnosis of FND or MUS.

 

[rvallee]

I just stumbled across this forum, and the misinformed idea that a diagnosis found in the DSM-5 implies that it is a "psychological process" is driving me crazy, so I have to comment. I am a clinical neuropsychologist and I specialize in neurodegenerative diseases (i.e., progressive neurological conditions that can cause dementia, including Alzheimer's disease, Parkinson's disease, and everything in between). Just because a diagnosis is found in the DSM-5 does NOT mean that it is caused by psychological factors or that you can somehow talk yourself out of it. That's absurd. Do you think that anyone with Alzheimer's dementia, dementia with Lewy bodies, Parkinson's disease dementia, etc., etc., etc. is offended because their diagnoses are also found in the DSM? NO, they are not. If a DSM diagnosis = one that is "caused by psychological processes," then that would obviously be great news for those folks.

To make it into the DSM, a disorder only has to INVOLVE mental, behavioral, cognitive, or psychological factors. They may be the cause OR the effect (case in point - the diagnosis of "personality change due to another medical condition."

@rvallee @Mithriel

It would be nice if this were true. This is not how it's used with us, unfortunately. And the immense power imbalance that exists between a patient, especially one struggling with memory, attention and cognition, makes it too easy to be used this way and many do. So many people with ME have been screamed at, in person, by a physician about how their issues are psychological and they CAN "exercise and happy thoughts" their way out of it. In fact it's the literal basis behind the evidence base for how ME is "psychological", straight from the trusted experts' lips.

There seems to be an idea of how medicine works, and how it actually does. We patients see how it really works because we live with the outcomes, they don't cease to exist once the door closes.

For sure I know that good physicians, and good psychiatrists, don't do that. I have consulted with two psychiatrists years ago and although they were not useful, they were not awful. Most of us here know that. Many physicians and psychiatrists do those things, however. In the end we cannot police the profession, it is entirely self-managed and not exactly high on the old "customer service" thing. We can only point out to instances where standards fail, but seeing the complete dismissal from every institution in the profession, and how common they are, deviation from those standards is fully permitted. Those standards are more like suggestions with many exceptions.

Some of this recent discussion started from a law textbook that explicitly asserts this: "ME is psychological because it's in the DSM". Those ideas go far beyond the confines of psychiatry, they affect the broader world out there and most of it is, unfortunately, horrible for us. In this example it's used explicitly to discredit the person, the real-life implications are enormous for us, they turn us into second-class citizens.

 

[Snowdrop]

@ems223

I see that you have been signed up here at S4ME since May 2021. So you may well have some idea of the ongoing issues we have with the BPS and their views if you've spent any time reading here.

If that is the case it seems sad to me that among all the things to be driven crazy over you choose a possible misspoken word about the holy book. These things do matter but nowhere near as much as untold numbers of people suffering because of a cabal of psychiatrists / clinical psychologists not just misspeaking but actively choosing to misrepresent their work for their own benefit. If I was a psychiatrist/ clinical psychologist I think that I would focus more on the human toll.

 

[Sean]

People here are interested to a large degree because the evidence for CBT for ME has been so poor and now that that has been recognised by NICE there is a threat that people with ME will be re-routed to the same unproven treatments via a diagnosis of FND or MUS.

This is the next battle. Preventing the BPS mob from trying to end run around NICE by

i) changing an existing diagnosis of ME to FND, or
ii) diagnosing FND in addition to ME, or
iii) just diagnosing new (i.e. undiagnosed) ME patients with FND, thus conveniently disappearing ME from the start.

That is clearly the path they are now on.

 

[Mithriel]

I just stumbled across this forum, and the misinformed idea that a diagnosis found in the DSM-5 implies that it is a "psychological process" is driving me crazy, so I have to comment. I am a clinical neuropsychologist and I specialize in neurodegenerative diseases (i.e., progressive neurological conditions that can cause dementia, including Alzheimer's disease, Parkinson's disease, and everything in between). Just because a diagnosis is found in the DSM-5 does NOT mean that it is caused by psychological factors or that you can somehow talk yourself out of it. That's absurd. Do you think that anyone with Alzheimer's dementia, dementia with Lewy bodies, Parkinson's disease dementia, etc., etc., etc. is offended because their diagnoses are also found in the DSM? NO, they are not. If a DSM diagnosis = one that is "caused by psychological processes," then that would obviously be great news for those folks.

To make it into the DSM, a disorder only has to INVOLVE mental, behavioral, cognitive, or psychological factors. They may be the cause OR the effect (case in point - the diagnosis of "personality change due to another medical condition."

@rvallee @Mithriel

We are not anti psychology or psychiatry as long as such and especially not against FND because it is in the DSM-5. We were fighting against it before it went in the DSM because the research used to justify its very existence is rubbish. It is an ideologically forced non existent disease.

It is difficult to argue against because it has never been spelt out exactly what the proponents believe is going wrong in the body. They say that certain reactions in a neurological test mean the cause of a patients ill health is psychological but they have never explained how they think that psychological processes can make the knee move in a certain way.

There are lots of papers looking at how to make the diagnosis palatable to patients when some research finding exactly what the line is from thoughts to dysfunction would save doctors form having to learn how to fool the patient and stop them discovering that FND experts say that FND is the new name for Conversion Disorder and has put hysteria onto a scientific footing.

Then we have things like the DECODE study where 10 years of records showed that psychogenic seizures were not reduced in people referred to a clinic but the treatment was successful and should be carried on because patients found it acceptable and it lowered their anxiety about their seizures. The studies are all confirmation studies!

FND is bad because it ends the diagnostic process. Once they say that is what you have no one looks any further. If CBT doesn't work then it is the patient's fault they are not well.

Neuropsychologists are being fooled by their colleagues into thinking the evidence is much stronger than it is. The fault is with the people who invented this category of disease not with the patients who would be content with any diagnosis that helped them and any treatment which gave them back even some sort of life.

There is research being done into Dementia and Parkinson's disease, there are people looking for treatments, they can get care, their family is not told they just need to do a bit of exercise and they will be cured. To compare people with ME or those told they have FND (a common occurrence for those with ME nowadays) with more established diseases is to misunderstand our situation.

I am sure you mean well and try to help your patients but being told off as naughty children by being unfavourably compared with other diseases is a tactic that has been used against us for decades by people building careers and making money for treatments which either do nothing or do us harm.

No one with Parkinson's disease has been left lying close to death by starvation because they are unable to swallow food but it happens if you have a diagnosis of ME. People with ME are left for decades bed bound with no benefits and no interaction with the medical profession.

Parents of children with ME are take to family courts to have them removed, this doesn't happen with other disease. One of the ME experts trains police officers to recognise the abuse of children that gives them fatiguing diseases.

So if we do not react like patients with other diseases recognise that we have never been treated like patients with other diseases.

 

[Sean]

brain scans of FND patients appear to demonstrate that conscious parts of the brain have become over-involved in movement

Even if true, how do they know that is not because something in the body has changed that imposes a higher demand on movement, and hence involvement of the conscious in managing that movement?

If your body isn't moving normally and easily, then it is going to take more effort to compensate, including conscious effort.

In the same way that it does for patients with Parkinsons and MS.

 

[Andy]

brain scans of FND patients appear to demonstrate that conscious parts of the brain have become over-involved in movement

Even if true, how do they know that is not because something in the body has changed that imposes a higher demand on movement, and hence involvement of the conscious in managing that movement?

If you body isn't moving normally and easily, then it is going to take more effort to compensate, including conscious effort.

In the same way that it does for patients with Parkinsons and MS.

I can remember, while still trying to work and live a 'normal' life, of having to become ultra-focussed on the task at hand to complete it. Healthy people, pushed to their limits through, for example, top-level sport, wilderness exploration or other extreme challenges, often talk of being able to focus on nothing other than putting one foot in front of the other, or some such appropriate wording. It would seem though that we obviously have the 'wrong type' of over-involvement, whereas the healthy people get to have an acceptable type of over-involvement.