Article: We Might Have Long Covid All Wrong (covers FND,ME/CFS,includes Sharpe,Garner, Carson and more).

I have seen cases of Functional Neurological Disorder. I have helped care for people with FND in the mental health sector. It is a very distressing illness for the pwFND and their families/carers.

Primarily these have been seizure and a few tic disorders but particularly - unable to move a limb, which had no neurological cause. They had careful neurological examination by at least 2 very experienced neurologists and had regular neurological monitoring. They had full investigation with radiology (CT, MRI and functional MRI and PET) and extensive blood testing. It was not post-infectious.

They did have major psychiatric disorders that accompanied their FND and much care and respect was given to them. Many improved over a long period of time with multidisciplinary input (all professional groups - neurology, psychiatry, psychology, occupational and physical therapy, social work and peer support as well as access to full disability payments). A lot of input, was also with, their families and carers to help them understand and support them as there are high levels of stigmatisation for pwFND by other health professionals, their families, friends and basically all sectors of society.

 

There does seem in practice enormous variability in who is diagnosed with FND. I have one acquaintance of several years standing who has an FND diagnosis who understands it to be a synonym of ME/CFS, and though I don’t know them well enough to interrogate them about their symptoms, from casual observation I would have thought a diagnosis of mild ME a possibility. This is something very different to what @hibiscuswahine describes above.

It may be that there is a clinical useful grouping of patients with non epileptic seizures or specific movement disorders, and there are patients who feel their FND diagnosis helpful. However, as others have said, in general usage and in the literature, its glib application to anyone with a medically poorly understood symptoms, its inconsistent usage with alternative even potentially inconsistent meanings (disorders in function without identified structural impairment vs anything believed to be central sensitisation vs anything believed to be psychogenic vs medically unexplained symptoms) makes it an unhelpful and potentially dangerous label.

 

They now actually claim they have "positive" signs to identify this. Unfortunately, the studies seem generally to identify people as having it based on signs, and then they test to see if they are more likely to have these signs than those without the disorder. It's circular reasoning.

 

I worry about lots of sick people getting an FND-type diagnosis because I am under the impression that all it gets treated with, if anything, is psychiatric drugs, exercise, and CBT. But what happens if someone gets heart failure or appendicitis or COPD or some other condition which has helpful treatments available but the FND diagnosis diverts the doctors attention from the actual conditions being shown by the patient and the help the patient could have got is not even thought of?

 

It seems clear that some patients given a FND diagnosis believe it is correct, and that they are gaining something from the diagnosis. It can be a lot better to have an imprecise diagnosis than none at all.

 

What's the supposed sign for functional cognitive disorder?

 

They relate to speech patterns they claim to have observed, if I remember. I'll look for one of the studies and post it.

 

it seems reasonable to think that some might people have psychiatric issues that can lead to whatever weird physical manifestations--panic attacks would be an example. But the problem is extrapolating that in reverse direction and insisting that because it CAN in some cases lead to weird physical manifestations, everyone with odd physical manifestations must therefore be somatizing. It is not remotely logical.

 

See patient comments responding to publication of WHO definition for LC in Children, eg —

 

Compare and contrast. We still don't fully understand that very common "Functional Respiratory Disorder" asthma. From After asthma: redefining airways diseases (2018, The Lancet), Summary of Recommendations —

Of course asthma also has a long history of psychogenic causation, eg Review of psychosocial stress and asthma: an integrated biopsychosocial approach (1998, Thorax).

From Pathophysiological Mechanisms of Asthma (2019, Frontiers Pediatrics)

 

Functional tic disorders can become a problematic diagnosis when the diagnosis is made by people with inadequate training or experience. Usually people, often young people will get this diagnosis because it is a sudden onset of tics with no prior history of tics or the developmental disorder known as Tourette’s syndrome.

Some children can develop tics in childhood and they disappear by adolescence, they don’t tend to have full Tourette’s and they do not usually affect their social, mental or emotional functioning but they are subject to bullying and social isolation. Child mental health services provide support to them and their families and hopefully they get through this and normally tics resolve.

Tourette’s which is viewed as a developmental disorder and symptoms become apparent from an early age or develop during a time of developmental stress (a the brain undergoes massive change in adolescence with pruning of grey matter and particularly in the pre-frontal cortex as it prepares for adult maturation and functioning). In Tourette’s they will have involuntary utterances, like unusual noises, swearing, they also have involuntary movements not just facial and neck tics. It causes significant impairment to their social, mental and emotional functioning and wellbeing and there are medications to help suppress some symptoms but over the last couple of decades, pwTourettes have challenged the stigma by society and society is more educated about their illness.

Functional seizure disorders often co-exist with epilepsy and they are called non-epileptic seizures. They usually present with near continuous seizures and not responding to medication. It can get to a state they cannot function at all eg, feed themselves, attend school, take part in social activities and is very distressing for their families as they are just getting worse and worse despite neurological investigation etc. They are hospitalised for investigation, they are given 24 hour EEG monitoring and close nursing care and are videotaped to watch the fitting and what corresponds to a seizure and what doesn’t on the ECG. It is very clear what is seizure activity and what is not. That includes partial seizures where the whole body doesn’t convulse.

Full seizures are usually accompanied by a post-seizure change in consciousness, often very tired, sleep, disorientated etc until the brain has recovered. That does not occur in non-epileptic seizures. So the person will have the the “behaviour” of a seizure, and for example go and do a complex task, which would not happen after a EEG observed fit.

Functional Seizure Disorder is rare. After neurology has established these are non-epileptic. Liaison Psychiatry is called in to perform a full mental health assessment to rule out psychiatric disorders that can be treated with medication based on the psychiatrist’s clinical experience and this is a sub-specialty of psychiatry that requires an additional three years of training.

The process of a mental health assessment takes a long time, often weeks, (not an hour), building a rapport with the patient and their family. It is not just women. Over a period of time, psychiatrists or a psychologist, working with the family may uncover a stressor/cause. Sadly this can be a variety of things which includes abuse on any level, sexual, physical, psychological or there has been a difficult relationship stressor they couldn’t share with their parents because of some sort of cultural taboo (for example).

I practiced in general medicine for several years before training in psychiatry. The problem with the “whole” of medicine, which includes psychiatry is that it is a vast body of data, research, science etc, that knowledge is changing daily as new research arises. We have to learn diagnostic categories and there is (to me) a clear delineation between medical and psychiatric disorder. But I do not make up the criteria, that is done, in my country, over in the USA - as I was taught DSM, not the UK diagnostic system ICD. Although we understand the UK criteria as that is part of the history of psychiatry, I probably have a different perspective as we code things differently.

Yes, that is always up for interpretation, psychiatrists often differ in their opinions, (and we do sit down and challenge each other in peer review and listen to our seniors and juniors who give fresh ideas and new research) and patients also disagree with their diagnoses and we often are challenged to defend our diagnoses, in court and to families and with new information, frequently people are re-diagnosed and yes, plenty of diagnostic mistakes are made and people’s diagnoses also can change with time due to development events like adolescence and for women, menopause due to hormonal changes, head injuries, infections, drug abuse etc

Training at medical school is firstly on all the biological systems but we are also taught psychological medicine, the later is the first time we can become indoctrinated with psychosomatic medicine. During clinical years there is very little exposure to functional disorders.

I only saw them when I was working in psychiatry and over 25 odd years, I saw about 3-4 over that time, out of the few thousands of people I cared for as registrar or a consultant.

I saw no functional cognitive disorders. I did a long period of work/study in psychogeriatrics which specialises in cognitive disorders throughout the life-span and the care of people with dementia. I saw none.

People need thorough cognitive assessments and I totally agree the “signs” that I read about is not what I was taught but I just have to put that down to a different country. They are very dubious. I never used them, we did cognitive testing that psychiatrists are trained in (cortical i.e. temporal, parietal and and frontal lobe testing) and when I did a physical examination it is clear people have sub-cortical dementias due to Parkinson’s and many other type of dementias.

If there was any concern we had not covered everything in our diagnostic assessment, we would ask a clinical psychologist to do a full neuropsychological assessment, this is the gold standard for testing cognition. We also did radiological scans, CT, MRI, SPECT and PET to look at the causation for the cognitive deficit. Functional MRI was being developed during my time in psychiatry and not readily available on the public system.

Hopefully this has clarified things. I am not happy with the free use of the term “functional disorders” that I see in so many spaces, I get very upset that this is abuse on many levels for the person, their families and to the fabric of psychiatry and medicine. But I can also not deny the existence of these disorders. I also do not have the power to change it and am choosing other things to advocate for as it is very apparent that members of this forum are very capable at challenging it.

edit: typos

 

Thank you @hibiscuswahine for this valuable account. I was aware that there might be a group of patients that were helpfully described by a diagnosis of FND without out any necessary psychogenic implications but had not understood the reality, and as @dave30th has always pointed out in his work on this it is important to recognise the very real issues experienced by patients even if disagreeing about the utility of the term FND.

However we are seeing in the literature an explosion of conditions and symptoms being subsumed into FND. It is common for papers to regularly cite inflated incidences of FND, claiming it to be the most frequent group of patients seen by neurologists, whereas the FND patients of the sort describe by @hibiscuswahine are relatively rare, many papers now regularly list other conditions such as ME/CFS, fibromyalgia, IBS as FND and there is a worrying new trend to assert that many patients with identified neurological conditions such as CVAs or MS have an additional FND component. We are seeing massive empire building by people who believe/assert without any reliable evidence that almost anyone with neurological symptoms has psychogenic issues that need to be treated with psychological intervention and exercise.

Added - also this lumping together of various diagnostic categories under a single heading, previously MUS and increasingly now FND, is then used to justify use of research into those component categories to indicate treatment for all in the larger grouping. Ironically, though such as PACE has been discredited as evidence for GET/CBT helping people with ME/CFS, it is now being used to justify talking therapies and exercise based intervention for the massively expanded FND super grouping.

 

In the late 1990's and earlier 2000s Jon Stone, Alan Carson, and Michael Sharpe frequently made the same claims about the prevalence and "problem" of MUS (Medically Unexplained Symptoms) that they now make about FND. Apparently FND is MUS but with neuro symptoms. Stone, Carson and Sharpe seem to have now abandoned the all-purpose MUS in favour of promoting FND as "the problem".




Published in 2000:

'Do medically unexplained symptoms matter? A prospective cohort study of 300 new referrals to neurology outpatient clinics'
Alan Carson, Brigitte Ringbauer, Jon Stone, Lesley McKenzie, Charles Warlow, Michael Sharpe.



Method: The prospective cohort study with case note follow up at 6 months was carried out in the regional neurology service in Lothian, Scotland with 300 newly referred outpatients. Neurologists rated the degree to which patients' symptoms were explained by organic disease (organicity), GPs' reasons for referral, health status (SF-36), anxiety, and depressive disorders (PRIME-MD)


Results: Of 300 new patients 11% (95% confidence interval (95% CI) 7%-14%) had symptoms that were rated as “not at all explained” by organic disease, 19% (15% to 23%) “somewhat explained”, 27% (22% to 32%) “largely explained”, and 43% (37% to 49%) “completely explained” by organic disease. Reason for referral was not associated with “organicity”. Comparison of these groups showed that although physical function was similar, the median number of physical symptoms and pain were greater in patients with lower organicity ratings (p<0.0005, p<0.0005). Depressive and anxiety disorders were more common in patients with symptoms of lower organicity (70% of patients in the not at all group had an anxiety or depressive disorder compared with 32% in the completely explained group (p<0.0005).



Conclusion: One third of new referrals to general neurology clinics have symptoms that are poorly explained by identifiable organic disease. These patients were disabled and distressed. They deserve more attention.

https://jnnp.bmj.com/content/68/2/207

 

Only skied a few comments, so I don't know the context - these names make me roll my eyes - Sharpe,Garner, Carson --- what (+ve) have they ever contributed?

Article: We Might Have Long Covid All Wrong (covers FND,ME/CFS,includes Sharpe,Garner, Carson and more).

 

Stone and Sharpe defined what they called FND in a paper in 2008. At that point they said that movement disorders had to be approached with caution. Now any movement disorder is probably FND.

Just one example of a strange movement disorder is associated with a small cell lung cancer where the cells disrupt brain function. Where are practitioners warned nowadays?

Myotonic Dystrophy is an inherited genetic conditions and clinicians test the whole family. They have found many cases which had never been diagnosed in older generations as the faulty genes multiply in children so the disease is more apparent. Are FND experts looking for that?

I am very wary of science and medicine in particular saying that something is not there or can't be happening. I was taught that the immune system was unusual in that it was the only bodily system not under control of the brain. The guys who worked out the connection were asked about that and it turns out their background was not in medicine so they did not realise that was standard knowledge.

The list just goes on and on. The brain is so complicated ("Beyond words to describe" according to the New Scientist) that to state dogmatically that there is no damage to the brain so it must be functional is arrogant especially if the treatment fails as happened with the CODES study where the number of seizures was not reduced.

 

In the early 90s one of my early idols in science, Gerald Edelman, whose equations I was using at the time, wrote that the human brain is the most complex thing we are researching in science. Its complexity is extreme due to all the neural connections, associated tissues, and all the biochemistry, including the fine interactions during development and learning.

The brain is still nearly a black box. As imaging and scanning technology improve we learn more, but its so very slow. Its not like we can freely open up brains and perform long experiments on human hosts.

So the situation is like the early mapmakers. We don't know what is out there in the ocean and far lands, so here be dragons and sea serpents. BPS proponents are claiming the existence of dragons, krakens and for all I know the equivalent of fumious bandersnatch. I wonder if we should be calling BPS proponents Yahoos? (With apologies to Jonathon Swift who wrote Gulliver's Travels.)