Review The vicious cycle of [FND]s: a synthesis of healthcare professionals’ views on working with patients, 2020, Barnett, Tyson et al

Except they don't provide any evidence that this is what is going on. If they had evidence of non structural brain malfunctions they would be more specific and not use a vague term like functional. I think it only helps FND proponents to assume 'functional' changes are occurring just because we can't currently find a structural change.

 

If the authors' aim is for HCPs to be clearer about the diagnostic criteria for FND and thus more confident in communicating that diagnosis to patients, the logical outcome would be that they make that diagnosis less often, because they'll only be making it in cases that are unambiguous (where the supposedly reliable rule-in signs are definitely present and other causes excluded). That's going to mean more tests and passing-around of patients whose cases are uncertain, not less.

You can't logically tell HCPs that they can feel and show more confidence in a certain diagnosis because it's justified by specific and reliable criteria AND at the same time that they should reject uncertainty and not consider other explanations when deciding whether a case fits those specific and reliable criteria in the first place.

 

But we have the evidence from the patient's lived experience. The nervous system is malfunctioning - they tell us that and we can see it - but no structural changes are found so the reasons must be more subtle. That is all the 'functional' officially means and all it need mean.

 

Would that definition not include ME/CFS?

I can see how a functional diagnosis might help certain patients who are content with their lives and happy to not take further steps to try and figure out the issue. But to me it feels like giving up. It is accepting that there is a problem that isn't worth figuring out.

As you mentioned in the other post "As soon as you start doing MRIs you start finding little blobs that get referred to surgeons to do damage". Clearly it doesn't make sense to do surgery in many cases, however if things like this could be causing their symptoms then the 'functional' label isn't a particularly good term. Why not just use the term idiopathic neurological disorder? Seems just as useful and doesn't rule out potential causes.

 

ME/CFS could be considered functional in operational terms but I wouldn't call it FND because the malfunction may be entirely outside the nervous system, even if expressed via it. In FND it is reasonably clear that the problem is in the brain because it affects selective functions - like movement of one arm or leg.

Have you ever tried figuring out a disease? I spent thirty years doing that and maybe managed to figure out one or two but not many people get that far!!

 

Agreed. Surely all other possibilities should be ruled out....??

This is like going to a doctor having a sore leg and the doctor saying "exercise it, it'll be fine" without x raying it. If it turns out to be broken, exercise will do permanent damage. Further tests do not make the patient worse, they narrow down possible causes.

Agreed. This has got to stop.

I do not understand this compulsion to only see through the lens of your own perspective, not be able to see other possibilities exist, so assume someone is either lying or delusional.

 

The blobs in most cases probably aren't causing anything. But I agree you could just call it idiopathic but that has its downside too. We do know a bit about FND patterns. They can be fairly typical across many cases. Not so much unknown disorders as unknown disorder type A or type B. And the disturbed function is there in the symptoms and signs. I don't particularly favour the FND label but nothing is perfect.

 

Except that you cannot do that every time. Largely because in many cases there are no tests that actually rule many things out. The tests are much better at that than when I was a houseman but they are still capable of missing lots of things. And as I mentioned, as soon as you start chasing tiny blobs you get disasters.

I absolutely agree that doctors regularly give up on investigation when they should do more. This is one of the reasons why I think general practice should be abolished. Pretty much all problems need to be seen by someone with special expertise. 'Watch and wait' has no longer any place in medicine.

But there is another side to the coin. Nothing is black and white.

 

Very well put.

except it feels like the people in these fields seem to want to make it so, which might be a large part of the problem. The wish to make the uncertain, certain.

as you suggest it is about balance; you can't run endless tests and we are begging that clinicians cease stopping at one - at least the one that means we can be dismissed as psychosomatic.

While I appreciate the idea, it only works if we have those with actual special expertise and just not self proclaimed. Eminence based medicine is an abhorrent regression.

An interesting post though, which I shall ponder further.

 

That would probably save a lot of money, morbidity and lives...but I guess it also risks creating so many sub- and cross-specialisms that you eventually end up reinventing general practice!

 

I have been diagnosed with FND and both times the history was misrepresented in my records to make me fit the FND criteria. I don’t as far as I can see. Then there are the people with MS and Parkinson's. Do they have two diseases or were they misdiagnosed? Maybe FND is a mushier diagnosis in the US.

 

What conditions do you believe are genuinely "FND"? eg functional tremor, non-epileptic seizures (I wonder whether this is sometimes a misdiagnosis of repeatedly occurring vasovagal syncope due to severe POTS or panic attacks etc).

Things like the classic Hoover's sign might be more useful in fictitious illness rather than genuine FND.
https://www.sciencedirect.com/science/article/abs/pii/S0022510X17337474

Hoover's sign can be positive when there is actual brain damage:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7328420/

 

No need for new specialisms. You will always need to have doctors seeing patients fresh and deciding what speciality is most appropriate but that could be done far more efficiently if people with dysuria went straight to a urinary specialist and people wit heavy periods to a gynaecologist. And in most areas it would be done much more efficiently in a hospital with test facilities, even if a tiny one, like the medical centre at Zermatt, which is very good.

In the old days it was standard for doctors to have a primary triage role and also to have a special expertise. Basic medical clinics often started from scratch because the GP had no idea. Now we have the worst of all worlds with triage done by GPs with no ongoing training in any speciality and heavy incentives not to ask for specialist help and hospital specialists who no longer have any general role.

In Eastern Europe there has been a system called the polyclinic that sounds quite a good solution, although it probably would need major modification.

 

They were misdiagnosed.

 

Yes, I would include movement disorders and seizures that did not fit with structural lesions.
Presentations suggesting specific brain malfunctions.

 

The denial is really strong here. It cites "misperceptions" as a negative factor, but is utterly oblivious to the fact that no matter how they try to disguise their dog whistle to the patients, the MDs understand perfectly what is meant here and they will never respect it. They understand perfectly what it means by all this language about expressing confidence and lying to patients to build their trust, which is about as giant a red flag as it gets. It's very disappointing how such a tiny number of MDs can have the courage to reject clear nonsense.

What's even more twisted is how open they can be about it in what is largely accessible content like this. I guess they don't expect patients to be aware of it, don't know that we can read and understand the simplistic language they use to describe what is a pretty simple and straightforward concept. They may use the language of science and a bit of philosophical rhetoric with academic language, but the ideas are so simple that anyone who can read well enough knows exactly what is meant here.

And on the topic of patients being reassured, in almost every case I have seen, it's based entirely on, *drum roll*, this very misperception, that it's a legitimate medical entity and not just ye olde conversion disorder / hysteria. This is why FND patients get mad when we point out the tune the dog whistles are blowing. They don't accept that it's the same thing as hysteria, that it is a purely psychological model, even as most papers explicitly admit to it.

This is all a very offensive paper. I don't know what the MEA was thinking involving Tyson in anything. Very disappointing of them and the best course from now would be to drop her project, or at least start over with someone who doesn't hold on to the very offensive views that have blocked all progress for us.

 

Below is an unedited extract of a chapter in a document I'm preparing.

"Denial of Medical Treatment and Investigation

“Don’t call an ambulance for CFS again”!

..... we as a patient group are regularly denied the ordinary medical investigations into new onset symptoms available to others – a denial of standard medical care. These are often assigned a psychiatric 'sticky label' of 'functional neurological disorder' FND, afterall we already have CFS added to the ICD-11 ME symptom presentation.

"At first glance ME/CFS and dissociative non-epileptic seizures may seem to be unconnected, but several studies into a phenomenon known as neuronal kindling such as ‘An Etiological Model for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome’ (Leonard A Jason, et al) stress the neurological, rather than psychological, vulnerability of ME/CFS sufferers to such events. Despite this, an individual observed to be suffering from such a seizure – at least in Scotland – may be denied access to treatment in a hospital if a psychiatrist has stated in that patient’s medical record that his or her condition is deemed ‘behavioural’.

David J Black, in a article dated 16 March 2022 for Scottish Legal News[1]


Case history:

A woman suffering from severe ME was bedbound in a prolonged episode of PEM and was light and sound sensitive. When her husband returned from work he found her having a seizure. He noticed before entering the house that the music coming from next door was unbearably loud, to the extent that neighbours further down the street had been drawn out of their homes to see what was going on. An ambulance was called and she was taken to the local hospital. After a wait in A & E, she was seen by a female doctor who after some cursory reflex tests announced: that there was nothing wrong and that CFS was "never an emergency" and that they should "never call an ambulance for it again".

They never did.

Listening to music had been one of her pleasures in life and her husband was an avid listener. Together, they learned how to work around this new symptom. He would wear headphones and play it as loud as liked, and when they wanted to listen together, she could manage only 10mins at a low level. Any more than that, especially when she was sound and light sensitive would provoke a seizure.

Some years later, long after her husband's death, she came across a clinical case history published on Wiley, first published on 20 October 2023 titled “Musicogenic seizures—STXBP1 encephalopathy with reflex seizures.”[2]

She researched further through the References in the paper, out of curiosity, rather than self- diagnosis, as she was not going to be seen again as an ME patient for anything. Very quickly, she discovered that it was a rare type of seizure which included atypical absence seizure [3] mostly found in young babies to adolescents which was discovered in 2008.

As she was never investigated other that a few standard reflex tests taking all of 2 mins (by which time the seizure had long since finished), she would never know the answer. In any event, she had since learned how to avoid triggering them. Further trips to, or stays in, the bright and noisy environment of a hospital was not, she had established, conducive to her health.

Curiosity sated she left it at that.

That woman was me."



[1] David J Black: PACE-gate. Have we been Waddelled? | Scottish Legal News

[2] Musicogenic seizures—STXBP1 encephalopathy with reflex seizures - Desai - 2023 - Epileptic Disorders - Wiley Online Library

[3] STXBP1 Disorders - Symptoms, Causes, Treatment | NORD (rarediseases.org)