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

[Maat]

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)

Sorry, forgot to copy over the explanation of neuronal kindling with link.

"The theory put forward for neuronal kindling is contained in a paper titled “An Etiological Model for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” published on 1 March 2011 (one month after the PACE trial publication). The lead author is Leonard A Jason well known for many decades to the ME community, and appears in the ‘Voices from the Shadows’ film that same year. [1]"


[1] An Etiological Model for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - PMC (nih.gov)

 

[Woolie]

Tyson has bought in to the 'psychogenic' story, clearly. But if we take 'functional' at face value to mean brain malfunction at a subtle level without structural change it is perfectly legitimate. It may be that non-epileptic seizure events can now be shown on fMRI or sophisticated EEG, but since we have little or no idea how brain activity relates to thought that doesn't mean these are not events in a 'mind' if you believe in such a thing. This is where my other interest in the structure of human thought becomes very relevant. I think people have got it completely wrong so it is not surprising everything is in a mess.

I'm coming late to the party here, but it doesn't take much to work out that "functional" does not mean "brain malfunction at a subtle level without structural change". Epilespy is never called "functional", although by that definition, it should be.

This is the game, the dance - say you mean one thing when you really mean another.

 

[Jonathan Edwards]

This is the game, the dance - say you mean one thing when you really mean another.

Exactly.
The extended context of the bit quoted is a bit different though - whether we are always entitled to tell people who have been given this diagnosis, and find it helpful, that it is bullshit. Maybe so, but we aren't necessarily in a position to judge that reliably, I suspect. Or to offer an alternative means of support.

 

[Woolie]

Exactly.
The extended context of the bit quoted is a bit different though - whether we are always entitled to tell people who have been given this diagnosis, and find it helpful, that it is bullshit. Maybe so, but we aren't necessarily in a position to judge that reliably, I suspect. Or to offer an alternative means of support.

I see where you're coming from @Jonathan Edwards. The term MECFS is one that many patients find helpful despite its negative associations, and in that sense, FND should be no different. The difficulty with FND is that I think the term carries more causal assumptions than MECFS, ME or even CFS. None of those terms explicitly or implicitly endorses a psychological causal model - the causal question is genuinely up for debate. But in FND, that word "functional" carries so many hidden implications, and subtly guides people's causal thinking.

There's also a very special kind of subterfuge going on in the FND sphere, where the story presented to the patient is so carefully scripted and packaged, and is at odds with what's actually being said in the literature.

Even in the literature, there is a fair bit of dissembling going on, and it takes hard work and mental effort to see it sometimes. For example, the predictive coding model of FMD sounds kind of "neurological" and "science based", but the actual predictive coding aspect fails to account for why the vast majority of people who experience a prolonged illness or injury regain normal movement once their problem has resolved.

Human beings are very good at adapting our models of the world as feedback changes.

To account for those people who have persistent difficulty, the model has to attribute them with special psychological characteristics - for example, its been suggested that they are overly focused upon their internal bodily sensations or have developed intense health anxiety. That takes us right back where we first started - all the explanatory action is happening at the psychological level!

The best we can hope is that term FND might eventually open the door to new ways of thinking, and that it can at least draw researchers' attention to a collection of problems that desperately needs addressing and explaining. But I worry that the "F" part in the name might significantly slow progress by tethering people to a psychological way of thinking.

 

[Sean]

There's also a very special kind of subterfuge going on in the FND sphere, where the story presented to the patient is so carefully scripted and packaged, and is at odds with what's actually being said in the literature.

They have learned the marketing lessons well from the previous attempts at psychologising unexplained health problems.

They have a monopoly over a desperate audience, who have nowhere else to turn, and effectively no power to refuse them, and they are exploiting the shit out of it.

It is very dirty and disturbing stuff.

 

[Jonathan Edwards]

The difficulty with FND is that I think the term carries more causal assumptions than MECFS,

Yes, I am only too aware of all of that @Woolie. My point was a pragmatic one relating to the suggestion that we have the right to take away a diagnosis from people who find it comforting when we, ourselves, have nothing to offer in exchange. In the wider context it should of course be pointed out as incoherent and hypocritical.