Stigma in functional neurological disorder; a longitudinal study 2026 Mcloughlin et al

[Andy]

Authors: Caoimhe Mcloughlin, Neil Ramsay, Lineke Tak, Alan Carson, Jon Stone

Highlights​

• This is the first observational study longitudinally exploring stigma in FND and its associated factors.
• Stigma in FND is high, and does not improve over time.
• Patients with FND have high levels of co-morbid anxiety, depression and somatic symptom burden.
• Being in a relationship, identifying as man, higher age and levels of education were protective.

Abstract​

Background​

Stigma in Functional Neurological Disorder has been consistently reported by patient organisations as one of their biggest challenges. We aimed to longitudinally evaluate different components of stigma, namely perceived, internalised (self) and anticipated stigma experienced by patients with FND, and to explore associated factors.

Methods​

Participants were mainly recruited prospectively via outpatient clinics at two centres, shortly after communicating the diagnosis. Measures included: perceived, internalised and anticipated stigma, somatic symptom burden, quality of life, depression, anxiety, illness attribution, and experience of care.

Results​

Ninety-six respondents completed the baseline survey, of which 80 completed the follow-up (mean duration 7 months). Perceived stigma (Stigma Scale for Chronic Illness-8, mean 21.2) scores were in the moderate range. Regarding internalised stigma, 32% agreed they had considered that FND was their fault. Anticipated stigma was experienced most from work, followed by healthcare, then friends and family. Participants held a balanced view of their condition as physical and psychological in contrast to their perception of others' understanding of FND as psychological – which in turn significantly related to higher stigma scores. Identifying as a man, being in a relationship, higher age and level of education were statistically significantly protective against stigma. At follow up, perceived, self, and anticipated stigma, somatic symptom burden, quality of life, anxiety and depression scores did not change significantly.

Conclusion​

People with FND experience high levels of perceived, self and anticipated stigma, and have high rates of physical and psychological comorbidity, which, in this cohort, did not improve over time. Counter-stigma approaches need to consider these different sources of stigma, outside just healthcare professionals.

Open access

 

[Andy]

"Introduction​

Functional Neurological Disorder (FND) presents in varying ways including movement disorders, seizures, cognitive and sensory symptoms [1]. Previously described as a “forgotten” area [2], FND is now increasingly recognised as a valid, treatable condition at the interface of neurology, psychiatry and psychosomatic medicine."

Published in the "Journal of Psychosomatic Research".

As far as I could see there isn't any discussion of how labelling something as 'psychosomatic' will itself lead to stigma.

 

[NelliePledge]

Does anyone other than Stone (and his et al) publish papers on FND?

 

[Andy]

Does anyone other than Stone (and his et al) publish papers on FND?

I'm guessing that you mean this tongue in cheek but treating it seriously, yes, there are other people publishing on FND but I tend to find papers authored by Stone and Carson, in particular, as those most problematic, which is why I will post them here.

 

[rvallee]

This is truly one of the most bizarre things I've ever seen. Very little of this actually has to do with stigma, it's pretty much all about perception. Asking about "illness attribution" and "beliefs in illness" has nothing to do with stigma, it's framed as an entirely internal state with no external presence. They're so clearly trying to justify their work and have so little to work with that they put out nonsense like this.

This is more like a weird religious cult trying to figure out how to grow the cult's reach. I see nothing in there that actually relates to stigma in the sense that it should have in the context. It's the academic version of a "Do you like me? Yes/no" note to a crush in primary school.

Because of course their big idea is to simply work on the internalized state. They are the problem, and offer themselves as the solution. I've never seen anything like it outside of the weird trappings of an obsessive ideology, and this is clearly no different.

One of the weirdest thing is how they ask about illness attribution, clearly unvoiced but implicit is their idea that the correct answer is that the participants should equally consider it to be both psychological and physical, which they do, but the entire construct is built on the idea that it's entirely psychological, at the exclusion of any physical explanation, the literal definition. It's truly a remarkable study into delusional thinking.

Really, this is so hard to put into words, how insane it all is:

Our study shows that this sample of people with FND have expected high levels of physical and psychological symptom comorbidity, generally agree with their diagnosis, and experience high levels of stigma across the board

They're asking people at a clinic where you have to agree that you have to agree that you have FND and they're asking them if they agree with the diagnosis. As the people responsible for the stigma, since all physicians know the real definition, pretending to ask about stigma, but instead generally asking "do you have a crush on me? do you like me?" type of questions.

Regarding what helped patients in relation to the overall experience of FND – getting a diagnosis and feeling believed by professionals emerged as most important.

Reading this stuff is just mind-altering considering who it is from. I'm genuinely not sure whether antivaccine beliefs are any more insane.

Seriously, people in the future will be reading this stuff with total bafflement, that this can still be a thing this late in our scientific and technological development. It's so hard to understand how anyone takes this garbage seriously, it has no place in a civilized society.

 

[rvallee]

Chewing on this, the most bizarre thing is actually this:

People with FND experience high levels of perceived, self and anticipated stigma, and have high rates of physical and psychological comorbidity, which, in this cohort, did not improve over time. Counter-stigma approaches need to consider these different sources of stigma, outside just healthcare professionals.

This is their clinic. With their patients, which they 'treated' the whole time, or whatever, for a long time. They admit, using their flawed instruments but still, that there was no improvement to this dimension in their own cherry-picked patients. And talk about promoting measures to reduce stigma. Which they can't do, by their own data.

Even if we take what they say at face value, which no reasonable person should, they're very bad at this. Terrible, in fact. But it's not their fault. It's never their fault. Literally anyone, everyone, but them:

The fact that there was no improvement in stigma scores, indeed perceived stigma scores were actually minimally higher is worrying and is indicative of just how systematic and complex the problem is.

Then they go on a weird speculative rant about possible pre-conditioning for stigma from other sources in those people's lives, or whatever. It must be that, unrelated to their work, which is perfect, as long as no one checks, because even when they do check, they have nothing to show for it.

Because in the end, this is nothing more than a "give us money" appeal:

Ongoing prioritisation of the allocation of multidisciplinary services and training is crucial to maintaining this progress, so that FND can have parity of esteem with other conditions.

Just absolutely over-the-top bizarre stuff.

 

[Turtle]

Authors say it's functional, docs say no it's not.
Patients say treatment isn't working, but the stigma is.
Stop calling it FND and believe the patient that something is not functioning.

 

[Sean]

As far as I could see there isn't any discussion of how labelling something as 'psychosomatic' will itself lead to stigma.

And never will be. They know enough to understand that it is best to not ask potentially awkward questions about the basis for one's career and status and income.