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

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)

 

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.

 

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.

 

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.