Ep. 198: The Complex Interaction between (Social) Media and Functional Neurological Disorders

00:00:00: Hello and welcome to EAN Cast Weekly Neurology.

00:00:05: My name is Kirsten Müller-Fahl, I'm a medical doctor.

00:00:08: i'm an urologist and psychiatrist and working at Hanover Medical School.

00:00:14: I'm the past president of The European Society for the Study of Tourette's Syndrome and my main focus is obviously in tictosaurus and tourette syndrome.

00:00:24: Today, i have two guests welcome to Natalia Czajko and Anna Dolanska.

00:00:31: Natalya Czajecki is a neurologist.

00:00:34: She is a board member of the European Society for the Study of Tourette Syndrome and the Child Urology Panel Member of EAN.

00:00:43: She's specialized in movement disorders, also in tic disorders And our second guest today is Anna Donalska.

00:00:53: she is a psychiatry resident and doctoral researcher at The Medical University of Warsaw in functional neurological disorders and the border between neurology and psychiatry.

00:01:09: And therefore welcome to both of you, who are perfect for our topic today because we want about functional neurological disorders and specifically, the link between functional neurological disorders in social media.

00:01:25: So my first question goes to Dr.

00:01:28: Natalia Chaco And perhaps you can introduce this topic and describe what are most common clinical presentations of functional neurological disorder we see today?

00:01:43: Yes, sure.

00:01:44: Thank you so much for this kind introduction.

00:01:48: yes of course I mean now we are learning more and more about FMD So Functional Neurological Disorders.

00:01:55: In our previous podcasts We already mentioned that basically the definition of FMDE is related to any kind of neurological symptom.

00:02:06: That really...we don't find any structural change in the brain.

00:02:13: or basically the results of the neurological exam and clinical course are inconsistent, incongruent.

00:02:22: And what is also important that over time a definition of FND changed because now we use this rule in definitions.

00:02:31: so to diagnose FND you should during neurological exam, find some abnormalities that are typical for FND.

00:02:43: For example, inconsistency in the neurological exam of the tremor.

00:02:48: and coming back to your original question Kirsten so basically any kind of symptomatology could be functional neurological disorder or any kind.

00:03:06: before they were called non-epileptic seizures, but now there is also a shift in the name.

00:03:13: And then their movement disorders functional movement disorders and I think the most common ones of them.

00:03:22: But actually, our main topic of mine and Kirsten's interest are functional tick-like behaviors especially in adolescence.

00:03:30: They're also quite frequent.

00:03:33: but like I said any kind of neurological symptom could be functional.

00:03:37: for example now we have a lot of patients with functional cognitive disorders which is sometimes very tricky to differentiate from just the cognitive decline.

00:03:49: Yes, that would be I think my brief summary about the symptomatology.

00:03:55: Thank you so much for this introduction and today we want to talk not in general about functional neurological disorders but we want

00:04:15: Actually, I think that there are so many interesting aspects we will discuss during our podcast.

00:04:22: Well first of all you know... Many patients they seek information about FND and generally disorders in media including the social media.

00:04:35: Neurologists and doctors should be aware.

00:04:41: we have to be aware what are the risks and benefits of social media, and trends.

00:04:48: The second important point I think that Anya will talk about it is... Of course you know patients can use this as a supporting mechanism or connect with each other.

00:05:00: so not everything with Social Media is bad on FMD but We will, and I think this is an important aspect.

00:05:09: me and Kirsten we observed especially during the COVID-nineteenth pandemic.

00:05:15: And many other researchers in the world that well different places in the World they were people presenting with similar functional neurological disorders.

00:05:30: so for us an important example was functional tick-like behaviors.

00:05:38: And then we realized that these symptoms were similar because people sometimes observed... some influencers that had similar symptomatology.

00:05:53: So, of course we don't want to stigmatize anybody but it's just an important social context for these disorders I think has to be taken into consideration because as you remember FND It has a complex etiology.

00:06:12: We have to always take into account, you know this bio-psychosocial model.

00:06:18: so we know that people who had some biological predisposition for FND if it's combined with some psychological factors but also social factors and in the case now modern world these social factor could be social media.

00:06:39: Some people who have predisposition to FND can develop these symptoms and I think that's why it is very important to discuss this.

00:06:48: It's our responsibility as doctors, the societies such as European Society for the Study of Tourette Syndrome or European Academy of Neurology also fight against misconceptions related some disorders.

00:07:04: just inform correctly about them.

00:07:07: Thank you so much, Natalia.

00:07:08: You already mentioned that there are positive aspects of social media when it comes to functional neurology disorders but also negative aspect.

00:07:18: perhaps we should start with the positive aspects and therefore I would like to ask you Anna Donalska what other positive aspects?

00:07:28: And how can Social Media platform support our patients?

00:07:32: then perhaps give us some concrete examples.

00:07:37: Yes, I'll start with the good news because there really is some.

00:07:43: Media including social media can support people with functional neurological disorders but only if their information is accurate and part of our role as physicians neurologist psychiatrists to guide our patients towards trustworthy sources.

00:08:04: FND affects how the nervous system functions, not its structure as Natalia said.

00:08:11: And many patients arrived where office frightened.

00:08:15: they often take normal test results to mean nothing is wrong and I'm not being believed.

00:08:24: Clear explanations help reduce some fear of emphasizing that symptoms are real common and treatable because it reduces stigma.

00:08:35: It also helps in clinical practice and many current resources highlight that FND is diagnosed using positive signs, not just by ruling things out And when patients already understand that.

00:08:51: Because of the social media resources reliable ones its easier to build a shared model and move towards treatment.

00:09:01: Another advantage of social media is improved access.

00:09:07: Online platforms can provide psychoeducation and sometimes structured interventions.

00:09:13: Here I give an example of FND Hope, a platform for patients with FND And also i would like to encourage you to familiarize yourselves.

00:09:30: created by John Stone.

00:09:33: And later it was translated into different languages and is a very valuable source of information for the patients, but education alone is not enough.

00:09:47: It may improve understanding But we should remember that usually doesn't change outcomes on its own.

00:09:55: I would think good online resources as an on-ramp.

00:09:59: They can help with engagement, but they need to lead into proper treatment.

00:10:05: Diagnosis reinforce what we explain in consultations and this consistency builds trust.

00:10:13: So to summarize I would say that media can reduce stigma, improve understanding and increase access but it will only work if we guide our patients towards reliable sources.

00:10:27: And trustworthy content.

00:10:28: otherwise the algorithm.

00:10:33: Thank you so much.

00:10:34: Unfortunately, we do not live in such an ideal world and Natalia already outlined that there are also some risks and misinformation And you mentioned briefly what we have seen during the pandemic this social contagiation.

00:10:53: Can you explain a little bit

00:10:55: more

00:10:58: about it?

00:11:00: Yes, so this is well a big interest especially of Kirsten and I was supporting her.

00:11:08: A lot we did work together also within our European society for the study of Tourette syndrome.

00:11:19: So basically what we observed especially this time, although probably this phenomenon is already known was known before.

00:11:28: Is that in different clinics?

00:11:30: In the world for example in the UK but also Canada and United States?

00:11:37: Well in these English speaking countries People well young people.

00:11:43: Especially teenagers.

00:11:46: They they developed functionality-clad behaviors, and they had similar symptomatology which was very surprising.

00:11:57: Although people were from totally different parts of the world like I said for example UK and Canada And these movements vocalizations really resembled some specific ones for example, specific turn of phrases which were very unusual to some influencers.

00:12:24: And that's why in the earlier work and Kirsten was actually one who used this term.

00:12:36: We could use here then the name of social contagion, you know in this context.

00:12:42: And that's why we... In some of our papers used this terminology Mastsocegenic Illness because it is really Here these social media are sort-of like a factor.

00:12:56: unfortunately That has this negative influence Like I said on somebody and thats'why people developed similar symptomatology.

00:13:06: and it's interesting that depending on the cultural context too because For example, in Germany and here really again Kirsten's group especially worked very hard on this topic.

00:13:22: There was another influencer who well I don't want to again stigmatize anybody but who wasn't male for example?

00:13:32: And that is why for example in Germany the symptomatology phenomenology also this sex ratio was different than English speaking countries because sort of the index case, as we call it or the influencer was male.

00:13:49: So you know... We're really learning about it.

00:13:54: I think It's important for us to understand and like i said To know how potent this is.

00:14:02: so that's a new And very strong factor that can have impact, like I said on people who are predisposed to develop functional neurological disorders.

00:14:18: within this context.

00:14:19: Because you know if i watch a lot of videos with people with ticks probably...I will not and I did watch a lots of videos of people with tics but for another person This could be an important factor, so that's why we should take this into consideration and remember about it.

00:14:44: And you know especially during the pandemic probably was present because people were restricted contacts with others.

00:14:54: they were at home young people felt really lonely a lot or following social media platforms and we have hypothesized that this could be a mechanism.

00:15:09: Again, in these people who really had the predisposition probably even genetic or biological but you know I think that's... We cannot ignore it anymore because just social media is everywhere.

00:15:24: And yeah..we have to remember about those risks.

00:15:29: Thank you, thank you so much for this explanations.

00:15:33: My next question goes again to Anna what do think Do all these different aspects influence our work with patients?

00:15:42: So on one hand we see difference symptoms and another other hand What is your experience?

00:15:49: two patients have different expectations because of all the social media influence.

00:15:57: Yes, social media doesn't only help.

00:16:02: It can also complicate the clinical work.

00:16:06: and first issue is these expectations because patients often arrive in their office with ready-made narratives which are shaped about what they've seen online.

00:16:21: And sometimes it's helpful but sometimes very misleading but almost always it's very certain.

00:16:29: And this can affect what patients accept as evidence and how these patient interpret diagnosis, and public conversations about FND are often highly polarized.

00:16:44: some argue is over diagnosed why others CSS overlooked neurological condition and this can lead patients to experience these diagnoses as dismissive, even when it's not.

00:16:59: The second issue I would like to bring up is symptom modeling since the pandemic you've already said using an increase in functionality-like behaviors especially young people.

00:17:14: social media often a part of this context.

00:17:18: These cases differ from classic Tourette's.

00:17:21: later on set rapid progression and more complex symptom patterns.

00:17:26: Most cases improve, but early recognition is important because unfortunately reinforcement can maintain symptoms.

00:17:36: And the third issue is diagnosis itself.

00:17:39: FND is not diagnosed by exclusion.

00:17:42: it based positive clinical science as Natalia have already said.

00:17:47: But patients exposed to scan equals truth may struggle with that.

00:17:55: So we need take a step back, we need demonstrate the signs so Symptoms change with distraction, and we need to explain clearly what it means for our patients.

00:18:11: We will show them how they work properly.

00:18:18: And the fourth issue is yet organic harm.

00:18:20: Communication plays a central role in FNB.

00:18:24: Harm may result from delays, misdiagnosis or dismissal And when patients already arrive skeptical, often shaped by online narratives this becomes even more important.

00:18:39: So what can we do?

00:18:41: First I would encourage to ask with curiosity and asked... What kind of information have you come across?

00:18:50: What made sense to you?

00:18:53: The second thing is to validate the experience but separate it from explanation.

00:18:59: You can tell your patients that your symptoms are real.

00:19:03: Now let's build the most accurate understanding together.

00:19:06: and it is also sometimes beneficial to explain.

00:19:11: algorithm, to emphasize social media promotes engagement not accuracy.

00:19:18: The goal is not to eliminate the internet, it's to guide patients towards better information and help them find higher quality sources.

00:19:30: And plan follow-up because one conversation rarely overrides months of online influence.

00:19:39: Thank you so much.

00:19:40: Natalia already mentioned that we have this biopsychosocial model for the occurrence of FND, how does social media fit into Anna?

00:19:59: Let's look at social media within a broader context.

00:20:03: I think this fundamentally problem of brain function, these symptoms are real and involuntary.

00:20:11: they result from how brain networks function not from structural abnormalities.

00:20:17: And in the bio-psychosocial model biology refers to brain network functioning.

00:20:25: Psychology involves attention and expectations, And the social context now includes media environments.

00:20:34: Predictive models are useful to understand this.

00:20:39: The brain is continuously generating expectations.

00:20:44: In certain contexts, this expectation can influence perception or movement.

00:20:51: That doesn't imply that symptoms are not real.

00:20:53: It means they are generated by real brain processes.

00:20:58: So, where does social media fit in this model?

00:21:04: We can see it as a trigger because it can increase salience and provide symptom templates especially in vulnerable individuals.

00:21:12: .It can also act as maintaining factors.

00:21:15: ,it can reinforce symptoms via attention comparison repetition.

00:21:21: Unfortunately, it can also amplify stigma which in turn impacts outcomes.

00:21:29: But media can help as I've said previously because structured online intervention and tele-rehabilitation have shown promising results.

00:21:38: so media is not inherently negative But it's a part of the environment.

00:21:47: and I would say that media is not the cost of FND, but we should remember that its shapes attention expectation and belief.

00:21:57: And It can either support or interfere with recovery.

00:22:03: Yes, thank you so much.

00:22:04: Natalia let's finally talk about ethical aspects and responsibilities on all sides.

00:22:10: So on the side of the clinicians but also on the site of influencers Journalists and advocacy groups?

00:22:18: What do we think?

00:22:20: Yes, I think so.

00:22:23: Indeed this is a nice summary point for all that we discussed because as matter of fact if i can mention here but plan to publish it and give an example... We have huge responsibility especially as clinicians and representatives you know, opinion leaders in the field and European societies.

00:22:52: And on the other hand exactly that patients organizations under shaping of like Alakana said the narratives of disease.

00:23:01: because to give an example we... This is again Kirsten's work.

00:23:07: Kirstens team has shown How big are the misconceptions related to Tourette syndrome in Germany, for example?

00:23:16: In general public.

00:23:17: that really and we know this also from other studies.

00:23:20: That's really.

00:23:21: people still think that Tourettes syndrome is still only coprolalia although we know now that from studies, it's only present in like five percent of people.

00:23:35: And this is unfortunately also partially because the narrative is spread through media.

00:23:42: Then you know... This isn't just an example.

00:23:45: Of course not F&D but It's important to distinguish Tourette and functionality-like behaviors.

00:23:55: these kind of symptoms are more typical.

00:24:01: Of course, they can occur in Tourette but there're more typical for FND, more typical functionally like behaviors because the treatment is also different totally different and also again we want to just show them correct image of the disease, so that again these misconceptions sometimes are harmful for our patients and not spread.

00:24:28: So I think we as people who were clinicians first during our psychoeducation should mention this about this aspect of media.

00:24:41: like Anya said if you see it can have an important maintaining factor for a patient and the family, we should do our best to inform that maybe some strategists could be helpful in less harmful way.

00:25:01: And then as representatives of different societies... We tried this with European Society on the study of Tourette's syndrome that we should, you know try to correct if there is a misinformation.

00:25:22: and there was for example a misinformation related to one program.

00:25:27: That was called Bailen Out Loud.

00:25:29: I can mention this here...that was shown as a Tourette syndrome but it's actually not the Tourettes Syndrome.

00:25:36: It's functionatic like behaviors And i think its important for societies.

00:25:44: this is not a real representation and correctness, it's our ethical obligation for our patients.

00:25:53: And like I said that this is important because then it has repercussions to the diagnosis.

00:26:00: Yes, thank you so much.

00:26:01: After we have touched on many different aspects related to social media and FND I would like for a short key message to your colleagues regarding this topic.

00:26:18: Anna, you can start!

00:26:21: Thank you.

00:26:23: Let me close with some key messages.

00:26:26: First, something for clinicians.

00:26:29: I would encourage to ask the patients about media exposure because it's clinically relevant and impacts clinical work.

00:26:39: Secondly...I would encourage show designs And explain clearly and provide resources.

00:26:49: It's important to remember that FND is a positive diagnosis, rule in diagnosis.

00:26:54: We should also keep in mind to minimize its organic harm and that communication is part of treatment.

00:27:04: so most importantly information opens the door but therapy drives change.

00:27:12: And for the public, I would like to encourage you not to diagnose yourself based on a video and tell that F&D is real and treatable but requires proper assessment.

00:27:27: And media can support recovery but it cannot replace car.

00:27:33: Thank you so much Natalia.

00:27:34: anything you'd like to add?

00:27:36: No i think this was very nice summary if we could just echo these words.

00:27:42: I think that social media, you know the just inherent part of our world.

00:27:47: we cannot ignore it.

00:27:49: Also in the medicine We have to sort-of accept it and with its positive negative signs And be aware ask patients about it, especially within the context of FND.

00:28:04: And if its used in a positive way so we should encourage this.

00:28:08: but if there is an dis-maintaining factor then we should be able to recognize that and not just be judgmental or supportive for the patient.

00:28:19: Finally yes I would encourage all you join

00:28:25: us

00:28:27: within our forces to fight misconceptions.

00:28:30: And for example, like we did I can disclose this right in editorial if you see or to inform people about it of course in the nice politically correctly way.

00:28:43: but i think it's important too.

00:28:45: discuss this also within the academic context.

00:28:48: Thank

00:28:49: you.

00:28:49: Yes, thank you so much for this very interesting discussion and

00:28:57: thank you for listening!