The FND Society Podcast
Welcome to the FND Society Podcast, a series tailored for clinicians and researchers in the field of Functional Neurologic Disorders.
The podcast covers a wide range of topics, from basic science aspects like neuroimaging and biomarkers to clinical practice issues such as diagnosis, treatments, and outcomes. It also explores how FND is understood and treated within the current medical and psychological paradigms, with a goal to enhance knowledge and awareness across the medical community.
Our goal is to make this a valuable and accessible resource for professionals, delivering the latest research in FND through engaging conversations with experts in the field. We aim for this series to be a practical and informative experience, connecting listeners directly with groundbreaking developments and insights in FND. It's our hope that each episode will contribute meaningfully to your professional knowledge and understanding.
For more information about the FND Society visit: www.fndsociety.org
The FND Society Podcast
Biba Stanton - Blending Neurology & Psychiatry - Practice Considerations in FND
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This episode’s guest is Dr. Biba Stanton, the clinical lead for Neurology at Kings College Hospital in London. One of Dr. Stanton specialties is the complimentary elements of Neurology & Psychiatry for FND, and we discuss the biopsychosocial model, the role of FND educational groups, best practices for prevention of iatrogenic harm in FND, and FND & special population considerations (such as women, and those with autism spectrum disorders).
We invite providers to participate in a brief survey examining driving recommendations for patients with functional seizures. Developed by a dedicated study group, this survey seeks to capture the current opinions of physicians worldwide on this topic. Please take a moment to share your expertise: https://survey.alchemer.com/s3/8065625/functional-dissociative-seizures-and-driving
Welcome to the Functional Neurologic Disorder Society podcast. I'm your host, Erica Cotton, coming to you from Chicago, Illinois, with a special thanks to Michael Romeo, our production engineer, coming to us from Australia, and our content curator, Ingrid Hertzauer, from the UK. This episode's guest is Dr. Beba Stanton, the clinical lead for neurology at King's College Hospital in London. One of Dr. Stanton's specialties is the complementary elements of neurology and psychiatry for FND, and we discussed the biopsychosocial model, the role of FND educational groups, best practices for the prevention of the atrogenic harm in FND, and FND and specialty population considerations, such as women and those with autism spectrum disorders. This was such an excellent and holistic consideration of FND clinical care, and I hope you enjoy this conversation. Well, thank you so much, Biba, for joining me. I so look forward to chatting with you today. If you could start by telling me and our listeners a little bit about your academic background and how you arrived at FND in including it in your work.
SPEAKER_04Yeah, of course. So, well, I'm mainly a clinical neurologist rather than an academic, but the story of me getting FND, I guess, goes all the way back to the starts of my career. So after medical school, I actually went into psychiatry training initially, as I've, I guess, always been interested in mental health. But then I kind of found myself missing internal medicine and decided to go back into sort of the pathway for physician training and ended up in neurology. But you can see that then over the years, I've sort of drifted back to these conditions at the interface of brain and mind. Had a few detours, I guess, along the way. So my PhD research was really focused on behavioural symptoms in neurodegeneration, so apathy in Alzheimer's disease and Parkinsonian disorders, actually. But I moved towards FND, I guess, because really during my clinical training, I was just seeing so many patients with functional symptoms. And seeing that they weren't well served by the system and that there was so much unmet need. So it just struck me as the most important area, really, to go into and develop an interest in. And then I guess fortunately, my department here at King's and at the Maldives Day has supported me to develop that interest and really build up a service for people with FMD.
SPEAKER_01That's wonderful. Actually, yeah, when I was um doing background and uh research for this podcast recording, I was like, hmm, psychiatry or neurology, psychiatry or neurology. There was there were publications in each, there was training in both, and I was like, hmm, wonder which one that's going to map out to. But it's it's such a common overlap, and I think it's a bit artificial that we've made such a stark distinction between these two very connected things.
SPEAKER_04I, you know, I'm really interested in how we could improve psychiatry training for neurologists and neurology training for psychiatrists. And there are some models, I guess, internationally, where I get it maybe it's done a bit better than it is here in the UK. Um yeah, so it would be great if more of us had the opportunity to learn from both those perspectives, right?
SPEAKER_01Yeah, I mean, here in the US, uh the boards are still connected because it used to be more of an overlapping specialty in training, um, where there would be more crossover, but in more recent decades, it's completely, you know, diverged into these two separate things. So you'd think that they're completely separate, but they're actually still very historically connected because they used to be when the when the brain used to all just be the brain. Which was interesting. Okay, wonderful. So on that note, um, given you work across multiple fields, what are your opinions about FND in terms of lumping versus splitting? Subtypes, um, different mechanisms for different subtypes, differences in the way psychiatry and neurology approaches lumping versus splitting?
SPEAKER_04That's an interesting question. Thank you for asking it. But I actually wonder if maybe I'd like to almost challenge the premise of the question that lumping and splitting are alternatives, and maybe start by saying that the first thing to think about is the kind of purpose and limitations of diagnosis, right? So lider patients want a diagnosis, and of course, often it is really important for them to feel validated or access validation from society of their experiences, or to access treatment pathways. So for sure it serves a purpose, and of course it's what patients expect when they come to a doctor. But at the same time, I guess all of us as clinicians know that the diagnostic categories we've created are just attempts to impose some kind of logical structure on what's really a massively complex thing. They don't necessarily perfectly reflect a straightforward biological reality. So all of our diagnostic categories, I think, are limited. Um, but the question for us as clinicians, when we've got a patient in front of us, is really what's useful for that patient at that particular point in their journey. Um so I think if you always keep that at the back of your mind, that's really helpful clinically. And then alongside that, if you're able to use a kind of individualized formulation-based approach to treatment planning, then hopefully we can take the vest from the lumpers and the splitters, right? So, you know, um, there are many patients for whom things we've learned from lumping, kind of generic principles of neural rehabilitation or of fatigue management might be relevant. But there's also many patients whose treatment can be informed by things we've learned from splitting, if you like. Um, you know, maybe specific physiotherapy approaches to motor symptoms, for example. So I don't see them as alternatives in the sense that you've got to pick one or the other, but rather complementary perspectives which have both led to um useful aspects of patient management.
SPEAKER_01That is the most thoughtful, nuanced answer that I've gotten when I asked that question, which is usually, oh, I'm I'm a lumper, or oh no, I think there's differences in this. And it's very refreshing to hear a dialectic of both being held. And even though they might sound mutually exclusive, that actually that's that's the way a lot of things are, you know, in terms of medical.
SPEAKER_04One respect, maybe in fairness, Erica, it in which I've got more interested in lumping, is I'm particularly interested in how we support patients with really complex functional symptoms affecting multiple body systems. So maybe somebody who's not just got functional neurological symptoms but's also got a chronic pain syndrome or hypermobility or POPS. And how can we make sense of that complexity or support patients to make sense of that complexity? And I think there is some utility in thinking about an overarching framework of alterations in interceptor processing that can allow us to fit together functional neurological symptoms on the one hand with patients' more complex symptoms on the other hand, right? Why do some people with differences in their connective tissue experience much more severe symptoms than others? Well, I guess that can fit into that kind of framework of thinking about how altered interoception can change our experience of uh bodily signals. And so I sometimes find that for patients with those complex symptoms, taking that slightly uh overarching view of the brain's role in interoception in many of their symptoms can be really helpful in um yeah, just helping them to make sense of what's a super complex picture for them.
SPEAKER_01Right, exactly. And F and D is unique, I think, in the level of heterogeneity and complexity.
SPEAKER_04So I think it's yeah, almost like a marker of complexity, right? This is what I've been trying to persuade our uh sort of managers and service commissioners of that we really need to recognise that nearly everyone with F and D is going to have some element of complexity in terms of comorbidity, psychosocial factors. And that's the reason why I feel like it's really important to bring expert assessment quite early in the patient journey. So it's often not so helpful for patients to have to use a stepped care approach where they start with some a really focused, targeted, simple treatment and then fail before they can access what they really need. So I guess my view would be that we need expert assessment up front and then to direct patients right from the start of their journey to the level of uh treatment that they need, whether that's something more straightforward or something more multidisciplinary and complex.
SPEAKER_01Right, right. Um, along that note, you know, you're mentioning complexity, um, both medical complexity from the sense of additional contributory diagnoses, usually multiple diagnoses within the F and D spectrum, right? I think it's rare to get a singular F and D presentation, right? Usually it's split across maybe one more dominant presentation, but then pieces or subsets of the other F and D subtypes with medical complexity. But then layered on that, and that's a great segue into the next part that I really wanted to pick your brain about, is the layers of biopsychosocial complexity that maybe should be considered more in medicine for influence on other medical conditions, as biopsychosocial factors influence all of medicine. But I think particularly in FND, these biopsychosocial factors that add additional layers of complexity on top of an already complex condition. Um, and you've done great work in publishing about biopsychosocial models. Um, and if you wanted to tell our listeners a little bit about how you think about evaluating those factors and incorporating them into treatment plans and incorporating that into the broader picture of the individualized patient and their complexity.
SPEAKER_04Yeah, well, I thank you for asking that. I think that you're absolutely right that this importance of understanding um a patient's experience within their broader psychosocial context is not unique to FND, right? We should be doing that, as you said, in all of medicine, especially in all chronic illness, because it just isn't unique to FND, right? We know that alterations in uh people's wider experience shapes their lived experience of illness. And that's why in any chronic illness, right? You can take COPD, ischemic heart disease, rheumatoid arthritis. There's only a modest correlation between objective markers of disease severity and people's lived experience of being ill. And the reason I think that that correlation is only modest is a lot of the variance is explained by these wider factors. But in reality, how do we do it? Well, I guess it's about often it's about having enough time to spend with your patient, right? So, in in and this is perhaps one unforeseen um negative aspect, maybe of people with FND being managed more within neurology services and less within mental health services, because at least in the UK, a neurologist would typically just have 30 minutes for the new patient, which you know it's really difficult to take as comprehensive a history as you would like and examine someone and explain your thoughts to them. 30 minutes.
SPEAKER_01Right, 30 minutes for the brain, like just exactly.
SPEAKER_00We take the most complex organ and say, you've got 30 minutes, go. It just seems perhaps like a model that is not quite matched to the level of organ complexity.
SPEAKER_04But once you've got time, um absolutely, then um it should be within all of our skill sets as clinicians, right? To to talk to a person and learn about their story. Um, and I often try to persuade neurologists to spend a bit less time on some of the things they might traditionally do. So, or I don't know, for example, in functional cognitive symptoms, I don't think there's much point doing formal cognitive testing in in a neurology clinic. I don't think it adds much. And I say you can you can use that time that you've saved by not doing cognitive testing to just ask your patient about their life and their story, and that can then really inform um an individualized formulation that's going to guide your treatment planning. Um, and I think you can't do it in 30 minutes, right? But I think um a neurologist can do it. We've not got quite as much skill in it as psychiatrists do, but I think a neurologist with an FND interest who's got enough time should be able to um think about their patient in a holistic way and use that to help set out a plan for them.
SPEAKER_01Right, right. I think I've with the some psychologist, right? Neuropsychologist by background, um, but in practice, my goodness. Um and one of the the things that my neurology colleagues say is, oh my gosh, you find out so much about the patient. And I was like, well, I have time to talk with them. I mean, I don't have a lot of time. I mean, we get an hour, which is luxurious, luxurious in terms of gathering patient history. And I'm really grateful for especially my neurology colleagues that that I work with here at Northwestern because they do such an excellent job mapping out the medical history and neurologic history very, very clearly so that I don't have to repeat all of that. I can know exactly what symptoms I'm going to be, you know, asking about, talking about, which ones I don't need to ask about. And then I can just spend the rest of 45 minutes or more talking about these biopsychosocial factors, which usually unearth a lot of really useful information that then guides the treatment planning. But it it is very nice when neurologists say, oh my gosh, you just, yeah, that makes so much more sense. Or yep, I knew you'd find this, or yep, this is that it's it's sad that that can't happen in every context, right? That every provider doesn't have that time to actually sit down with a patient. Um, and is 60 minutes enough? No, I mean I kind of scratch the surface. It takes a lot longer to usually uncover more of those pieces. And sometimes I have to split it up over multiple visits. Some providers here in the US, mental health providers, um do things like two-hour intakes, which is I don't exactly know how they bill for that exactly.
SPEAKER_00And I would why in my hospital they would say would say, nope, we can't bill for that, so you're not doing it. Uh bless them.
SPEAKER_04But I'm sure it would be useful, right? And you would probably learn more and be able to have a really positive conversation with with your patient if you have that amount of time to spend.
SPEAKER_01Right, right. And and my colleagues who do report doing that, the depth that they can go into or the nuance, but that just the level of understanding that they can glean from spending that much time talking to a patient, which it not even just a patient, a person, right? Because then you actually get a chance to treat them like a person and get to know their lives and their nuances, and it kind of takes takes the focus away from the medicalized context to the person in front of you.
SPEAKER_04And it's just something I think, as well, about patients really needing to feel heard and feel listened to. And often people with FND will have had such a difficult journey through healthcare and felt that they faced a lot of stigma or being dismissed by health professionals actually. And that can set things off on a bad foot where it makes it hard for patients to have confidence in our formulation or in what we're telling them. And I think it's just so egregious that patients do feel validated by ours so that they can then have confidence in what we're recommending to them. And part of them having that confidence is to feel listened to actually.
SPEAKER_01Right. I'm wondering, um, that's a great segue into the discussion you published on a psychoeducation group. Um, and speaking of patients feeling confident, feeling heard, nothing really says this is valid and we are taking you seriously, then here is a group for it, right? At that we sponsor here at the hospital. So can you tell us a little bit more about your experience with psychoeducation groups and recommendations and pitfalls, warnings of what not to do? Definitely.
SPEAKER_04Well, well, first of all, I suppose I would say how running a psychoeducation group is not in any way an alternative to offering an actual treatment programme, right? So you've got to recognise the limits, I think, of what you're trying to do. And in a setting where resources are constrained, I think there's a danger that people or managers or commissioners might think, oh well, we've we've offered the education group. That's you know, that that's and obviously that would be a major pitfall. Um but whereas education groups definitely have a role is in as a sort of step in post-diagnostic support, I suppose, right?
SPEAKER_01I was thinking it's a part of the diagnostic process almost. You know, like you get the diagnosis at sort of the capstone of diagnosis to treatment and sort of first step to broader treatment.
SPEAKER_04Exactly, exactly. Um, because FND can be a difficult condition to understand, right? And there's lots of misunderstandings about it. So I think uh an information session can be a good opportunity to put that right. Um, and and we've got some data on this now, haven't we? I don't know if you saw um Kate Bowley recently published some work uh uh on um the impact of psychoeducation groups on patients' understanding and confidence in the diagnosis and did show some changes, although it didn't affect some things we might hope that would have also improved, like stigma and uh anticipation of facing discrimination. Um, but in our group, what we do is we hold it online, which has worked really well because it's kind of feasible and easy for the clinicians, but also accessible for patients who might have mobility difficulties or becoming from a wider geographical area. And we run it once a month, so that means anyone who's referred, they're not going to have to wait long to attend. And um then we've got talks from the multidisciplinary team, so a neurologist, a neurosychiatrist, a physiotherapist, and a psychological therapist. And that feels really important too, actually, because I guess part of what we want to do is destigmatize the mental health aspect of the conditioning, and by patients seeing us all working together as a team where the neurology is really integrated into the neurosychiatry and psychological therapy, maybe that can be part of that. Um yeah, and we we all give a talk, and and we we also have a patient contributing and talking about their own experience, and then at the end, we have a QA. And of course, this is often the best part. Patients ask such brilliant questions unfailingly every month that opens up really interesting discussion. And also, I think importantly, they see that there's other people out there struggling with maybe similar problems to them, and that can be, I think, really valuable as well. So I'm really passionate about this because I just think it's such an easy win, right? You don't need much resource, you don't really need much clinician time. If you really wanted to, you could all pre-record your talks and just have one clinician facilitate them. We we all tend to attend because I don't know, it kind of feels symbolically important that we're all there and present. But I think we could do it with one clinician to facilitate pre-recorded talks. It's super easy, and I think patients really appreciate it.
SPEAKER_01Oh, it sounds very effective. I'm wondering what's the breakdown of more talks versus open open uh question and answer for patients. How much time do you leave? You know what? I think we need to change this.
SPEAKER_04So that's one part that maybe we should improve because at the moment in a two-hour session, we only leave 20 minutes for the question and answers, but it often goes on longer. And I guess that's telling us something, isn't it? That that's the part that patients really value. So we're looking just at the moment at how we could review our model. And I think we probably ought to make our talk shorter and our Q ⁇ A longer.
SPEAKER_01But I was I was wondering about that. It's it's been my experience as well that once you start opening those those doors for questions, they can just pour in and then they're good questions. They are not, they they're not unhelpful, they're not unrealistic. They're and often just so relevant to people's lives or their specific circumstances that are maybe more nuanced or haven't been explored or explained. It's it's always just so interesting what questions people do ask and want to know. Sometimes there are similarities, but other times it's just specific or new ones are very thoughtful, right? Just exceptionally thoughtful and um.
SPEAKER_04And I think we'd worried what would the groups be, you know, hard to facilitate? Might there be people who, you know, were just stressed or or making it hard to have a conversation that brings everybody in. But actually, it's just not been our experience at all. Uh, you know, of course, you need somebody chairing and and and managing the questions, but it's not been difficult to do that.
SPEAKER_01Right, right. Wonderful. Um, we have a similar skills group. Well, it's we have a skills group at Northwestern, but um it's it's more an intervention group than a psychoeducation group. I do more psychoeducation individually, but the first few sessions are, you know, speaking of the lumping and the splitting, I tend to talk to my patients about the skills group is the basic skills for F and D, the skills that everyone will benefit from, sort of like the psychoeducation model. And then it follows the Alan Carson, you know, five areas workbook when we work through each of the chapters. And it applies to people with F and D, it applies to people with functional seizures who have a bit of an F and D comp a functional movement component, it applies to multi symptom people. Um, and it it's very similar. You know, my my administration was very nervous about well, how are they gonna participate? What was safety and patients and all that? And They're fine. Like these are they're they're just fine. They're just there to learn. You know, like they show up each week, they do their homework, they participate productively, they support each other. And one of the most endearing things I've heard is after, and I kind of run run a group cycle for you know a few months and then the next group cycle starts and um different patients in different groups as they cycle out. And some of my patients, after they finish their group cycle, they go on to form their own group where they keep in touch with all the group members and then they continue to meet like monthly to support each other, which is just like the most endearing thing, but also it just kind of speaks to the power of that group nature as well as the positive psychosocial benefit and that you know they're they're really using the time well.
SPEAKER_04That's an interesting point because I've in a lot of chronic neurological conditions in this country, after someone gets a diagnosis, say of MS or uh Parkinson's disease, they often have a one-to-one sort of post-diagnostic support session, maybe with a specialist nurse. And I've always wondered if doing it in a group is, you know, we're doing a sort of cut-price version, and you know, perhaps it's not so individualized. But what you've highlighted there is some really positive aspects of the group setting, actually, as well.
SPEAKER_01Yeah, yeah. And and I and sort of discuss it as foundational, you know, where the first few sessions are more psychoeducation about what is FND and all those pieces. Um, but then the rest of it is skills-based, but it is more generalized skills, like we said, kind of the lumping group, where it's like, you know, these general pieces, these general understandings will will help facilitate generally symptom control or at least lead to good foundations for when then for patients who need additional treatment, beyond PT and OT and all those things that might be more specialized, as well as the individualized psychotherapy sessions, where then we get into each person. So then I feel like it's the splitting, right? Then we're getting into each person's kind of nuanced specifics. Um, but I I've I've I agree. I I they've really, it's been my experience that those patients really enjoy a group setting and they're not logistically or interpersonally challenging at all. I mean, occasionally get a get a person in a group setting, but I mean, those are manageable things. It's exceptionally rare, and it's the large majority are overwhelmingly positive with that. It's wonderful to see that and reflected in multiple places and locations and utilized. I think the more evidence we have for that, the more it also justifies reimbursement for those services, um, as well as clinic staffing um and offering those sort of services. I know my institution was a little nervous at first, but once I said it was financially viable, then it then it's all good. Right. But speaking of um continuing on the diagnostic piece, and we're kind of on the earlier end of when people are getting diagnosed and working through the medical system. You've also published a bit on um the role and utility of investigations for people with FND. Right. And I think there's multiple ways to look at the utility of additional tests to rule things out and the pros and cons of that approach. Because there is a benefit, but there's also potentially a cost. And I think the cost, not just financially, but emotionally, mentally, is is also sometimes overlooked. So if you could maybe tell our listeners a little bit more about your views on that.
SPEAKER_04Yeah, definitely. So I guess I'm interested in um the use, maybe the potential overuse of investigations, not just in FND actually, but in neurology and psychiatry more broadly. And well, I don't know it's the same with the states, but you in the UK neurologists tend to be quite um obsessional and careful and um worried about missing things and interested in rare disease. And all of that kind of leads to everything's a zebra. Right, right, of doing a lot of tests. Um, so culturally, it's hard for you to tell neurologists to do your tests, but I guess I'm trying to make the case. And of course, it's not that you never need to do tests, right? And you know, it's always going to depend on your degree of um confidence in the diagnosis following a clinical assessment. And very often there is a differential, and you might need to do investigations to rule out other possible causes of some of these symptoms. But as you've said yourself already, it's just about factoring in the potential harms. So the perhaps a really good example of that would be um MRI scans of the spine, right? So very often people end up with an MRI of their spine because they're we're investigating symptoms in their arms or legs. Um but we know as neurologists that what 40% of people over the age of 40 are going to have some disc bulges or other degenerative changes reported on an MRI spine. And we know that that's not usually clinically significant, but for patients, I may read a report saying degenerative disease of the spine, that sounds awful, right, and scary, and like you've got a permanent severe disease. Oh, and it's dangerous.
SPEAKER_01Right, and the term bulging is just it sounds awful and painful.
SPEAKER_04So I I I have so many patients come to my clinic and so I've got degenerative spine disease. And of course, when you look at the scan report, actually it turns out they've got kind of normal age-related changes.
SPEAKER_02Now sadly, I know.
SPEAKER_00No, not you personally, patients. Patients in their 40s get wrinkles as well. It's about the same.
SPEAKER_04So I guess there may be one thing I've been interested in looking at is could we uh mitigate some of that harm by kind of pre-informing people a little bit? So, yes, they might need an MI sign, but can we send them some information with their appointment letter that explains that what incidental findings are and that they're really common and that they're not always relevant to somebody's symptoms, and maybe that can can manage that a little bit. Um, but also, you know, we've got to remember that patients find coming for tests super stressful and waiting for the results really, really anxiety provoking. So um it's not to say we should never do them, but we just got to bear that in mind when we're, you know, deciding our threshold or or what might be the right thing for that individual.
SPEAKER_01Right. And I think I think you're highlighting a really important feature for not only FND but medicine, but that's expectation management, right? I think I think a lot of in a in a lot of medicine settings or medicine practices, just processes, the we know what's happening, we know why we're doing what we're doing, we know that certain things are completely insignificant, or you know, what's going to be concerning are the most likely outcomes. But oftentimes that again, I think it might come back to time as well. You know, how much time do we have to explain to people why we're doing what we're going to be doing, what the most likely outcomes are, what the implications for those outcomes might be, versus we kind of just, it's it's just kind of done. We give them the you know the two-line feedback of oh, it looks fine or doesn't look fine, you know, and here's what to do about it without really a whole lot of other explanation, which is it for a for a patient can be a missed opportunity or an opportunity for things for a miscommunication to to happen, especially in a population that's very vulnerable to um and sensitive to anything that might help explain their symptoms as well. You know, I think it's it's just something to be more mindful and careful of, but that isn't readily built in, especially with the time and expectations that we're able to give patients. Um one last piece of your time, because I want to be respectful of all the time you're giving us. Thank you. Um in diagnosing as well. I mean, this is a I love this. This particular conversation is more diagnostically heavy and focused and specialized in that way, which I'm really enjoying. I don't think we've really had a podcast yet that focuses this much in the nuances of the diagnostic process and settings and and ways to incorporate all these different pieces. So I'm really enjoying it. But one piece of that is consideration of more specialty populations and more nuanced presentations. So um differences between men and women with FND, um, how biopsychosocial aspects might influence um those gendered presentations, right? But then also other specialty populations like autism spectrum and FND, and how approaching diagnosis and treatment planning might be different for those specialty populations. Wow, that's a big question. I know. I end on I end on a tough one.
SPEAKER_04Yeah, well, let's they both need a bit of time, don't they? So and there's so much you could say about women in FND, right? So we can't we can only scratch the surface. But I guess as a feminist, I'm really interested in functional symptoms in women. And maybe the thing that I'm most interested in and would, you know, highlight for listeners is this idea that maybe we actually need to push back on some narratives coming from the feminist community. So you I've seen people writing about women with complex symptoms and arguing that um these women are finding it hard to access care and are being dismissed, which we would agree with, right? But uh then going on to say, and basically criticized, I suppose, the biosychosocial model. So by by talking about psychosocial aspects of complex symptoms, we're delegitimizing women's experience, and and really we ought to be having a more simplistic biological model, right? Doctors are missing all the Ellis Danlos syndrome, for example, right? And and prime minister writing about this for good reason, right, because of problems in the history of the condition. But I think ultimately making that argument is doing women a disservice, because actually we need to recognise that biopsychosocial complexity of FMD and women, if we're going to recognise like the role of the patriarchy in in making functional symptoms more common in women, right? Both in terms of you know oppressive constructs of gender in general and male violence against women specifically, if we write those out of the narrative by pretending that complex symptoms can be reduced to you know a simple biological model rather than recognizing all that psychosocial complexity, we're letting the patriarchy off the hook.
SPEAKER_01Right. Yeah, that's that's such an excellent point. I think it goes back to you know to are we lumping or splitting, right? And within this condition, are are we acknowledging that both can exist, right? That there are biopsychosocial factors, well, there are psychosocial factors that influence women's experience and that women live in an embodied in a world where certain things do happen, right, that need to be addressed and increase prevalences and likelihood. But then it's also perfectly valid that, you know, women's bodies are different and are there biological risk factors that might predispose women to developing certain kinds of symptoms. And it's probably it's both and, right? Probably not either or, right? But I think having too narrow of a mindset for either is not necessarily going to be as helpful or effective. Um on the other end of the, and one thing I found, I don't know, at um FNDS this past year, there was a great talk um on ASD as well. And it was um one of the interesting things about autism spectrum is most FND rays, more predominantly women, although still plenty of men. And I hate saying that FND is just a women's issue because of all the men that I treat, it's just what what about their experience as well? You know, kind of capturing men's experience with FND. Um, but then in autism diagnoses, that is a diagnose, that is a diagnostic entity that's gives so much more male, right? So we kind of have this reverse that happens. And I'm wondering your thoughts on um the gender prevalences that tend to happen in reverse with autism and FND being and what might happen with our prevalence rates.
SPEAKER_04And reflects underdiagnosising in girls and women who are better able to mask or who present in less typical ways. Um yeah, so uh, but that intersection is really important, I think, between gender experience and the experience of neurodiversity. Um, I mean that the whole field of why autistic people seem to experience um malfunctional symptoms is so important, I think, and underexplored so far and really interesting in lots of different ways. Uh, I guess, well, one aspect I'm particularly interested in myself as a parent of an autistic child who's struggled in school is just thinking about how children's experience of education that's not really inclusive is um is traumatic for them and difficult for them and shapes their experience. So um I meet so many um autistic young people in my clinic for whom their experience of school has just been such a chronic stressor, just every day being in an unsuitable environment that they have no control over. And that feels really important in their journey, in their experience of their illness. Um, so uh going forward, I think there's some fascinating biological stuff, obviously about intersectional narratism, for example, but there's also some really important stuff that's a little bit outside of medicine in terms of um education policy.
SPEAKER_03Um yeah, that I think is also really relevant to this area.
SPEAKER_01Right. I think even as we're considering autism spectrum and FND overlap, we're we're continuing to pull in the psychosocial models, right, of the societal influence on diagnostic recognition, diagnostic response, diagnostic prevalence. And I agree, I I I would not be shocked if we've missed a whole swath of women who actually do meet criteria for autism or fall on the spectrum, but and they've never been labeled and never been given proper services because of the biases that might exist around what autism looks like. Um but then also how society is modeled, like you said, the experiences for people with autism and how that might shape their experience and the expectation that individuals with autism should be in the same mainstream school setting and it should look like this. And this is kind of the way we do it. So everyone fits in this box and this mold. And if you don't fit in the mold, well, then that's kind of too bad for you versus okay, what mold do these individuals need? And how can we as society support what these individuals need with their specific and unique aspects, which are very difficult.
SPEAKER_04Not citing the problem in that child or young person, but but thinking about what they need from the environment.
SPEAKER_01Right. And I think in in general, our this is it would need to be a societal shift that changes to say we we value, we we want to prioritize creating specialty services and places and spaces, essentially specialty spaces for these individuals to have a different experience, um, which may or may not change. Hopefully it would change outcomes and experience for that. Yeah. Um it's interesting for this diagnostic discussion. We've brought in a lot of society's influence, right? I feel like that's an inner section more so than um I've discussed in in past podcasts.
SPEAKER_02I'm worried I might have been straying away from my expertise as a neurologist. But anyway, you've encouraged me to have this wide-ranging conversation.
SPEAKER_01Absolutely not. I think it's, gosh, I I think that is maybe part of the problem where um part of the challenge or growth area, it's speak more positively, a growth area for medicine and medical specialties, especially with FNDs. You know, there's medical specialty where you have to do your job of ruling things in, ruling things out, being accurate, you know, being precise and speaking the correct terms and having all the diagnostic labels met and all of those things. Um, but at the end of the day, it's a person who lives in a world that we all live in too, right? And we really can't eliminate that factor from the equation. Or I don't know if we did that, would just feel really sterile and sad and cold to me, versus, you know, including that. Yeah, we're we're at the end of the day, yes, there's this diagnosis, but hello, we're people and we live in a world and that world matters. Um, and including that is very relevant to patient experience. I think to our experience, I, you know, I think as providers, it's probably better for us too to remind ourselves that we're human too, and we live in a world and that that influences us and we're not robots going through our checklists. Um well, hopefully that means that human clinicians will still be relevant in a world of advancing AI technology. Oh my goodness, yes. I need to have an actually that is an excellent idea for a future podcast. I should have an AI panel discussion around AI and FND. Oh, do you have any AI experience you like to?
SPEAKER_04I don't. I'm absolutely hopeless, but I think it would be a great conversation. I would definitely listen to it.
SPEAKER_01Oh, oh, I know I might have you on there as the societal perspective. Maybe I could do a pros and cons panel. Oh, this is an excellent idea for the next one. Thank you. I want to be mindful of time. I know we're near the near the top of the hour, um, but this has been an absolute wonderful conversation and such an interesting and unique perspective, and I'm so appreciative of it.
SPEAKER_03Well, thank you for having me. It's been a pleasure to meet you again.
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