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

Andy

Andy

Retired committee member
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
 
Andy said:
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
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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.
 
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Matthew Butler 1, Oliver Shipston-Sharman 2, Mathieu Seynaeve 1, Jianan Bao 1, Susannah Pick 1, Abigail Bradley-Westguard 3, Eveliina Ilola 1, Bridget Mildon 4, Dawn Golder 5, James Rucker 1, Jon Stone 6, Timothy Nicholson 1
1. Institute of Psychiatry, Psychology and Neuroscience, King’s College London
2. Royal Surrey County Hospital NHS Foundation Trust
3. FND researcher and patient
4. FND Hope International
5. FND Hope UK
6. Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK

It's very much a King's College London thing.

We've discussed FND Hope before.

Bridget Mildon is the founder of FND Hope International - here are her online details:
Bridget Mildon is CEO and Founder of FND Hope International, a US registered 501c3 charity created to advocate for those diagnosed with Functional Neurological Disorder (FND). Since FND Hope’s inception in 2012, Bridget with the help of other volunteers has proceeded to create a global network of FND Hope charities which are independently registered in England/Wales, Scotland, and Canada and serves on each their boards.

A proponent of FND patient rights, Bridget created fndhope.org initially to build awareness. The website now also provides extensive health information, features webinars of leaders in the FND field and houses an online magazine.

Bridget oversees FND Hope’s international affairs and works closely with medical professionals, researchers, and patients from around the world. Not only was she an integral part of the team in creating the first FND Scientific Registry for research, but Bridget also works with industry thought leaders to develop accessible health information about functional illness. Through their collaboration, they tackle common misunderstandings, treatment, and education regarding those with functional disorders including writing the first patient booklet.

Bridget is an active participant in an International FND Research Outcome Measures working group and the Stanford FND Consortium. She has further advocated as a guest speaker at conferences in Birmingham, England and the United States’ Cleveland Clinic and Emory University. Bridget often speaks publicly regarding communication barriers between patients and doctors as well as highlighting how perceptions of FND have influenced our approach to the illness and those with the diagnosis.

As an active voice for FND diagnostic coding changes, Bridget has submitted commentary to the relevant work groups connected to labeling and diagnostic coding including a response in the British Medical Journal.

In an article published by Mad in America entitled ‘Turning Patients into Numbers,’ the wife and mother of three writes about her experience of being wrongly labeled as “psychosomatic” when her doctors were faced with medical uncertainty. After receiving a new diagnosis and then treatment, Bridget emerged as a patient of one to an advocate for thousands through the channels and influence of social media.

Bridget leads a team of 30-40 dedicated volunteers from around the world. Together they engage in awareness, social change, and online peer to peer support for thousands of individuals from over 100 countries. Bridget’s diverse experience and knowledge have cultivated into a unique perspective for those facing medical uncertainty and battling the challenges of living with Functional Neurological Disorder.
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Bridget appears to think that a diagnosis of FND is fundamentally different to a diagnosis of being psychosomatic.

I think the 'International FND Research Outcome Measures working group' is worth checking out (and suggest that we should get on with some ME/CFS Research Outcome Measures).

I'll make a thread for Bridget's Mad in America article (where she writes about 'her experience of being wrongly labelled as psychosomatic'.) and link it here.
Mad in America article: Turning patients into numbers, 2015, Bridget Mildon
 
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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.

 
the hemiplegic migraines page at 'rare diseases' said:
The three genes known to cause hemiplegic migraine produce proteins that are required for the normal function of nerve cells of the brain (neurons). These proteins play a role in the transport of electrically charged particles called ions across a channel that connects nerve cells (neurons), helping to regulate brain activity. Consequently, familial hemiplegic migraine can be classified as a channelopathy, a group of disorders characterized by abnormalities in the flow of ions, such as sodium and calcium ions, through pores in cell membranes (ion channels). The proteins produced by these three genes may also be involved in other areas or functions of the body as well.
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Daisybell said:
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.
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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.

Consequently, familial hemiplegic migraine can be classified as a channelopathy,
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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)
 
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