Long-Term Follow-Up of Patients with Mass Social Media-Induced Illness Presenting with Functional Tic-like Behaviors

This work published in Movement disorders clinical practice provides some of the first long-term follow-up data in this unique and emerging subtype of functional movement disorders. Today I'm delighted to be joined by Dr. Kirsten Müller-Vahl lead author on this study. Dr. Müller-Vahl is a professor of psychiatry at Hannover Medical School in Germany.

Welcome to the podcast.

Dr. Kirsten Müller-Vahl: Thank you.

Dr. Divyani Garg: So professor, to begin with, can you explain a little bit about mass sociogenic illness or MSI in the context of this study? And how does MSMI-FTLB [00:01:00] fit within the broader framework of MSI? Why did you decide to study this?

Dr. Kirsten Müller-Vahl: Yes. Similar to other centers beginning in 2019 and even more in 2020 experts in Tourette centers all over the world realized that there's a new type of tic like behavior. So until that, we were used to see children, mainly boys suffering from primary tics. And beginning at that time, we realized that a huge number of patients came to our outpatient clinics, and reported about symptoms similar to tics in Tourettes, but on the other side completely different from what we are used to see in these patients. And many experts immediately realized that this is not Tourettes and identified these symptoms as a kind of new [00:02:00] presentation of functional movement disorder.

Here in Germany we realized exactly at the same time that YouTube channel was launched and we identified symptoms in our patients, more or less identical to those presented in this YouTube videos.

And when we realized this, we focused in a first study more on this phenomenon, and we really could demonstrate that this was a kind of outbreak of mass sociogenic illness. So this means there was a kind of an index person, this influencer in this YouTube channel and all patients we saw confirmed that they had watched this YouTube channel. That only thereafter the symptoms occurred, and there was a lot of overlap, so identical movements, identical socially inappropriate behaviors, [00:03:00] identical words and things like this.

And this brought us to the idea that this is a outbreak of mass sociogenic illness via social media. And this was unknown so far. There had been some speculation about this of course, but before it was believed that for an outbreak of mass sociogenic illness, people must meet physically. And this threat can only happen when people are, let's say, in the same room. And here we could clearly demonstrate that this is not correct and outbreaks can even occur and spread only via social media and via internet.

Dr. Divyani Garg: That's fascinating. So you have also reported in the study that nearly 80% of the patients in your cohort reported improvement or remission over roughly a follow-up period of two years. So should clinicians be more optimistic when counseling families? And how should we [00:04:00] frame expectations in a more balanced way when we manage patients?

Dr. Kirsten Müller-Vahl: So I would say the prognosis and the cause of this specific form of functional movement disorder, what we now call functional tic like behaviors is not really different from what we know about functional movement disorders or in a more general sense, functional neurological disorders. But in this group specifically, we saw a lot of younger patients, adolescents and young adults, and this means the age was relatively young compared to other groups of patients suffering from functional neurological disorders. And younger age always, or in most cases mean shorter duration of disease. And these two factors definitely had positive influence on the prognosis.

So overall, I would say the prognosis is not that bad, but [00:05:00] it's also not excellent because we saw a complete remission in less than one third of patients. And this is what we want to reach complete remission of symptoms. So in other words, there's still a lot of work to do.

If we aim to reach complete remission, we definitely have to identify better factors to tell something about the prognosis and factors that really address more specifically, perhaps in a more personalized way of treatment, the problems of the patients, because this is definitely what we've learned.

All these patients suffer not only from movements, they all suffer from psychiatric comorbidities or at least some psychiatric problems. Some conflicts, stressors, and all this must be addressed in psychotherapy, and I think this is also a very [00:06:00] important aspect.

Dr. Divyani Garg: I would love to discuss some more of that. So one of the most compelling findings, and what you also just mentioned was that earlier diagnosis probably and younger age group correlated somewhat with better outcomes. So what could be the mechanisms that explained this? Could it be that this reduced reinforcement or there is, decreased illness identity formation?

Or, is it something else entirely?

Dr. Kirsten Müller-Vahl: Honestly I, we have to say we do not know exactly, but I think there are several different aspects that come together. So it's shorter duration of the disease, of course. Perhaps also in younger people, better coping strategies. Perhaps also more s upport because there are always parents or caregivers, the family that may support children more compared to adults.

Perhaps also better neuroplasticity in minors compared to adults. [00:07:00] So I guess it's not one single factor, but a lot of different factors. But for now I would say we have some data suggesting that the prognosis is indeed better in people at younger ages. And I think the data are relatively robust for a better prognosis in those with a shorter disease duration.

And this is an important aspect because it means we must make the diagnosis as early as possible. And this is an important aspect for all functional neurological disorders because without the diagnosis, the correct diagnosis, you cannot start with the correct treatment.

Dr. Divyani Garg: Absolutely. That's a really strong point. And just touching on what you mentioned earlier, so depression and higher overall psychiatric comorbidity they seem to be associated with worse outcomes. So does this finding suggest that we should prioritize more aggressive treatment of depression and other psychiatry [00:08:00] commodities in these patients. And so could these findings somehow shift the approach to management?

Dr. Kirsten Müller-Vahl: So, I think the treatment is always very individualized, so there's no that fits all. But if you have to look for comorbidities, so you actively have to screen the patients for depression, anxiety, but also for other, let's say, psychological problems. So in our study, we identified in a large number of patients conflicts in their families.

So this was not a clear psychiatric diagnosis, but there were conflicts, there were problems in the family, other stressors at school in the children. Or there were some patients with structural deficits. And this has to be identified. These individual factors must be addressed in psychotherapy.

So it's always [00:09:00] individualized, but you carefully have to check this. Not only looking at the movements, treat the movements this is not enough in my opinion.

Dr. Divyani Garg: Yeah. And you also in your study have found that patients who discontinued secondary gain had better outcomes. So this can be actually a delicate topic, particularly in very young people. And how should clinicians ethically and practically address reinforcement dynamics in families, schools, and online environments without actually creating stigma?

Dr. Kirsten Müller-Vahl: This is an important aspect. So first, I think the correct diagnosis must be made and the patient, and the families have to be educated. What does it mean? And in this specific group of patients, most come here to our clinics asking, do I suffer from Tourette's? And then the answer is no, you are not suffering from Tourette's.

But, and this is how I try to explain it, you are [00:10:00] suffering from another disorder. So you definitely have a problem. This is what's obvious, but the name of the disorder is not Tourette's, but it's functional movement disorder. So this hopefully results in a better acceptance of the diagnosis.

And then you must explain what it mean because not all patients know what is a functional movement disorder. And then you must explain that there are different factors that influence the symptomatology that increase, but also decreased symptoms that they are maintaining factors that they are triggering factors and so on.

And then you can ask the patient what made your symptoms worse? What make your symptoms stop? Or make it better. And then you can work on this. And all of these patients are able to tell you about factors that influence their symptoms and then you can bring the patient [00:11:00] to this little bit more critical point.

This is correct that there are also factors that may maintain the symptomatology, and what I've learned here in my outpatient clinic there is a lot of parents are absolutely aware of these factors and they are completely in line with all this education you bring to them. And therefore, I think it's really important to address it.

Not to hesitate to report what we already know about this, and only when speaking openly about all these factors, the families will be able to change these influencing factors. And for some families, of course, it's helpful to have a psychologist or psychotherapist who help with this because it's not that easy when parents report, okay, when we are doing this all symptoms [00:12:00] increase and therefore we stop doing this, then it's hard to say, just change it. So it may be difficult and therefore it might be helpful to have a psychologist who helps.

Dr. Divyani Garg: That's very helpful advice. Another interesting thing that I found was that reduced screen time did not significantly impact prognosis. So does this suggest that social media may perhaps, primarily act as a trigger rather than a maintaining factor? And how should this inform the way we counsel families about screen time and screen use?

Dr. Kirsten Müller-Vahl: So I think there are two different aspects. So screening time in general is a topic, but this is in all children and adolescents. This is one point. But in this specific group, we were able to demonstrate that social media time in general, but specifically looking at this specific YouTube channel was a triggering factor.

So in other words, we believe that our [00:13:00] patients developed this specific symptomatology because they looked at this specific YouTube videos. But you may ask the question, if they never had watched this specific video, what had happened? I believe they would have developed another disease because we identified in all these people other problems, as I've mentioned earlier, depression, anxiety, structural deficit stressor, and so on.

I believe it's only a triggering factor that was the reason why this specific symptomatology. And when treating these patients, this is also an important aspect, we have to be aware that treatment does not result in a symptom shift. So when treatment results in a reduction or complete remission of functional tic like behaviors and all other problems are still [00:14:00] ongoing, there might be a symptom shift.

And this has been reported also by colleagues and we also have seen it, and it may happen that then another type of functional neurological disorder develops.

Dr. Divyani Garg: That's fascinating. And I just wanted to shift towards the treatment aspects. So some of which we've already discussed earlier, but specifically the findings in the study were that despite high rates of psychotherapy use there were no clear treatment effects in terms of symptom improvement.

So what does this mean for designing maybe future interventions? Are we measuring the right outcomes or targeting the right mechanisms?

Dr. Kirsten Müller-Vahl: So currently, and this is definitely true for the whole group of functional tic like behaviors, we do not really know what's the best treatment and my personal view is that there's not one specific treatment that is effective in all patients. So what we have learned from our follow-up [00:15:00] study is that making the diagnosis is one first aspect, because there's a small group that really immediately improved.

I have had a small number of patients, they phoned me the following day after the consultation in my office and said, now it's gone. There was one young boy who said to me, okay, when I can stop it, I will do it. And I do not believe that this was malingering. So I believe it was really a functional movement disorder, but now he had a completely different view on it.

Therefore, I believe it's an important information for the patient that he knows that theoretically he is able to suppress and to stop all these symptoms. And when people believe that they suffer from Tourettes, then they learn, they read, they are educated. You can never stop it because it's completely involuntary and therefore this [00:16:00] is the first very important information.

And then, as mentioned earlier, you really have to carefully assess the patient. And then in most patients, I think it's a combination of behavior therapy and more psychotherapy focused on anxiety, depression, and all these comorbidities. That's an interesting aspect and we are just working on this too.

With respect to virtual reality based treatments. So this might be also an interesting aspect, how we could influence functional movement disorder. So there's definitely need for new treatment strategies and perhaps what your reality is one way how we could move forward.

Dr. Divyani Garg: That sounds really interesting and I'm really looking forward to your work on that aspect. Another thing was that in the study, male sex was associated with better outcomes despite a higher [00:17:00] prevalence of MSMI-FTLB in females. So what factors might explain this difference? Is it some biological aspects, psychosocial aspects, or is it related to broader patterns seen in functional neurological disorders?

Dr. Kirsten Müller-Vahl: Our sample was a little bit different compared to other samples reported by other researchers worldwide when it's more the broader group of functional tic like behaviors. In our first study where we describe the baseline data we had exactly 50% male and 50% female. And this is completely different from other groups.

For example, from Canada or France or Denmark, they reported 90% female or even 100%. So the percentage of females was much, much higher compared to our sample. And we speculated a lot what could be the reason. And the only aspect we identified was that when we followed this idea [00:18:00] of mass sociogenic illness and this influencer as an index person.

Then in Germany it was a man. Because the influencer was male. And in other countries, in Denmark and in the English speaking world, there were female, the most prominent and most on TikTok and YouTube watched influencers. And this was our idea that this was influenced by this aspect. There was no other factor we were able to identify.

It's only a very small sample where we found this specific aspects. And as you've mentioned I guess there are different aspects that may influence this better prognosis in male, but when we say female. More often affected than this is in line that the prognosis, even when male are affected, that then also the prognosis is better in this sex group.

Dr. Divyani Garg: [00:19:00] Thank you, Dr. Müller-Vahl , for sharing these insights and for your important contribution to understanding functional tic like behaviors in the digitally. It has been fascinating chatting with you. Thank you to our listeners for joining us on the MDS Podcast. Watch this space for more information.