International online survey of 1048 individuals with functional neurological disorder, 2021, Butler, Stone et al

ABSTRACT

Background
Functional neurological disorder (FND) is common, and symptoms can be severe. There have been no international large-scale studies of patient experiences of FND.

Methods
We created a patient questionnaire to assess FND patient characteristics, symptom comorbidities, and illness perceptions. Respondents were recruited internationally through an open access questionnaire via social media and patient groups over a month-long period.

Results
In total, 1048 respondents from sixteen countries participated. Mean age was 42 years (86% female). Median FND symptom duration was five years, and median time from first symptom to diagnosis was two years. Mean number of current symptoms (core FND and associated) was 9.9. Many respondents had associated symptoms, for example fatigue (93%), memory difficulties (80%), and headache (70%). Self-reported psychiatric comorbidities were relatively common (depression (43%), anxiety (51%), panic (20%), and post-traumatic stress disorder (22%)). Most respondents reported that FND had multiple causes, including physical and psychological.

Conclusions
This large survey adds further evidence that people with FND typically have high levels of multiple symptom comorbidity with resultant distress. It also supports the notion that associated physical symptoms are of particular clinical significance in FND patients. Dualistic ideas of FND were not supported by respondents, who generally preferred to conceptualise the disorder as one at the interface of mind and brain. We highlight the need for a broad approach to this poorly served patient group. Potential selection and response biases due to distribution of the survey online, mostly via FND patient groups, is a key limitation.

Paywall, https://onlinelibrary.wiley.com/doi/10.1111/ene.15018

 

You only accept an FND diagnosis if you believe that the mind and the body contribute equally to disease, mainly because the doctor just told you so.

I would never answer such a survey as I refuse to accept FND as legitimate disease.

 

Exactly, @Mithriel

I agree.

FND is not a disease.

 

Haha, yeah. This reminds me of people who post fake genius quotes from their kids to social media. They tooootally said this spontaneously, you didn't put those words in their mouths. Literally nobody cares about "conceptualizing" their illness, this is as much horseshit as pretending most of a company's customers just happen to say the company's marketing slogan without any prompting.

And anyway we don't poll people on facts, it wouldn't even make any difference if they found a particularly receptive culture that would mostly accept a psychological (or spiritual, or whatever) cause, we don't poll people on facts, not in science, not in anything. This is no different than asking whether AIDS is caused by a virus or by magic or demons. The responses are just as irrelevant.

The list of symptoms shows this is basically ME. About as expected. What even is this nonsense about "associated" symptoms anyway? They are just asking for symptoms. Of course it's because of their assumptions of the conversion disorder and it just looks ridiculous this way. The need to constantly sooth and reassure themselves that this is real and legitimate is so damn annoying. They are basically ass-kissing their ideology, what incredibly odd behavior that clearly shows they have little confidence in it.

Of course if we were to pretend that this research is credible and reliable, one conclusion would be that those patients do not reject a possible psychological influence, a cornerstone of the entire ideology and a false claim endlessly repeated as fact. But since they know this isn't legitimate research, they don't trust when they invalidate their own results and simply pick whatever parts of the conclusions they like.

 

Really no doubt that the vast majority of "FND" is clearly typical PVFS, with its various ME/POTS/dysautonomia/IBS manifestations, exact same as LC. Same crap, same bottle. So a large number, like with LC and PVFS from other pathogens, recover naturally and the rest, well, screw the rest.

I remain frankly confused at their obsession with what causes patients attribute their symptoms to. As if it matters even one bit. I guess without having anything of substance to discuss they have to latch on to useless trivia but still, the whole thing is such a clown wreck.

https://twitter.com/user/status/1423957742990118914

 

I would be surprised if at least some of the people diagnosed with FND didn’t actually have problems due to migraine.
See https://rarediseases.org/rare-diseases/hemiplegic-migraine/ for fascinating details.

 

https://twitter.com/user/status/1424230246015029248

 

I wonder what Simon Wessely thinks of this approach?

 

If you invent an I've-got-lots-and-lots-of-everything-in-me soup, you could then very easily draw a pretty chart showing all the many things from the various food groups that your soup has in it.

 

I was originally diagnosed with migraine and this is what they meant. It would automatically fit into the definition of FND as they have a very narrow view of neurological disease and nowadays I think someone with my symptoms would be told FND.

I believe that many MUS are actually channelopathy and would not be surprised if ME had problems with this. There was work done suggesting a problem but the researcher died and it was left hanging (as usual)

 

What really bugs me is that someone can have migraine with stroke-like effects, and yet be diagnosed with psychosomatic seizures. It’s cruel.

 

Full article at Sci Hub: https://sci-hub.se/10.1111/ene.15018

Edit to add; related discussion here: https://www.s4me.info/threads/autis...ález-herrero-edwards-et-al.31392/#post-455554