Front Burner - The mysterious case of ‘the TikTok tics’

Episode Date: February 17, 2023

Within the first several months of the COVID-19 pandemic, doctors around the world noticed something strange. Suddenly, they were seeing a surge of young patients presenting with sudden, explosive tics. But in many cases, these tics didn’t fit the profile of a tic disorder like Tourette Syndrome. Doctors started searching for a shared source that was causing the outbreak, and that search led them to TikTok. Experts at the University of Calgary have been leading the research. Azeen Ghorayshi is a reporter with the New York Times. Today, she takes us through what researchers have found about why so many teens were affected, what the pandemic had to do with it and the role social media played in the spread.

In the Dragon's Den, a simple pitch can lead to a life-changing connection. Watch new episodes of Dragon's Den free on CBC Gem. Brought to you in part by National Angel Capital Organization, empowering Canada's entrepreneurs through angel investment and industry connections. This is a CBC Podcast. Hi, I'm Jamie Poisson. I've had tics since I was like 12, 13. They started in secondary school, but we didn't know that they were tics and neither did anyone else

because my first tic sounded exactly like a hiccup. It was just like, it was like, it was exactly like that. So I thought I had hiccups all the time. People at school thought I had hiccups all the time. So that's why they were never seen as tics. So this is Evie Meg Field. On social media, she's better known by her username, This Trippy Hippie. She's become an advocate for people with Tourette's Syndrome

and tics, which are sudden twitches, movements, and sounds that can't be so easily controlled. Her videos on YouTube have racked up millions of views, and on TikTok, she has more than 15.5 million followers. Though Evie has been posting since 2016, her videos and many others like them, including some of singer Billie Eilish, really took off in 2020 during the pandemic. That's also when neurologists in Canada, the US, Australia and Europe started noticing high volumes of patients coming into the ER with sudden explosive tics. Soon the phenomenon was making all these headlines. It's not only strange, it's very worrying. The isolation and anxiety we endured because of COVID is having a lasting and unwanted effect

on an increasing number of teenage girls. And even more bizarrely, it seems popular TikTok videos are playing a role in it. On TikTok alone, several billion views on these hashtags. Billion. Correct. Several billion views. Yes. And in the comment section, thousands upon thousands of comments from young people wondering if they have tics. By any standard, Joey Leinhoutz is your typical 10th grader. But amid the pandemic this past winter, her body began to react to the stress differently. One day your child is healthy and then the next

day, the next day she had tics. Azeem Gureshi is a reporter with the New York Times. She's here today to take us through the story, what the pandemic had to do with it, the role social media played in the spread, and what the latest research out of Calgary has to say about it. Hey, Azeen, thanks so much for coming on to the show. Thanks for having me. So these cases of tics, they really spiked during the pandemic. And just briefly, can you tell me what the TikTok tics are? Like, what kind of symptoms were neurologists seeing in their patients? Sure. And I should say, neurologists aren't particularly big fans of the name TikTok tics,

but it just has kind of irresistible ring to it. You can't not say it. Yeah, I would imagine. So basically, you know, around fall of 2020. So, you know, after most of the countries that observed this had been in lockdown for a good period, neurologists started noticing that there were high volumes of patients showing up typically to emergency rooms with these sudden explosive tics. You know, at first, they didn't know what to make of these tics. Most of these neurologists are movement specialists who treat patients with Tourette's, you know, on a regular basis. And these tics did look different from Tourette's. In Tourette's, was it was a lot of girls,

it was showing up seemingly overnight, the tics were quite elaborate. And the other thing that they began to notice after some time is that the tics also matched each other. The neurologist who I spoke to, who I spent the most time with in Calgary, they described, I think it was January of 2021, a message popped up in the American Academy of Neurology, sort of like the forum for neurologists. And it was someone in Kansas City who was in private practice who said, you know, are other people seeing this? I would appreciate some help. I don't know what to do. And the neurologists in Calgary were like, oh, we've been seeing that too. And if it's happening in Kansas City, and you know, other neurologists also chimed in if it's happening here

and here and here and here in all these different places, there must be a shared source. Yeah, I want to come back to that. But but for you know, when you said, they're more elaborate than the ticks that they were seeing with Tourette's and that they match. Like, just describe that for me. What do you mean by that? So I don't want to overgeneralize because it's actually, it is a little more complicated what Tourette's is and how it's identified. But, you know, Tourette's tics tend to be more simple movements. So blinking your eyes or rolling your eyes or coughing or twitching your neck. And these teenagers were, you know, doing elaborate movements like whistling, thumping their chests. They were repeating some of the same words like beans and beetroot,

but also very elaborate phrases, a lot of really like, you know, kind of funny, offensive things to shout. There was an element of these ticks that was charming and clearly didn't, as the neurologist described it, like didn't disturb the kids the way that they also saw Tourette's ticks often disturb their patients, you know, and there is overlap, but they were pretty quickly able to determine that this is something else. Right. And so all these doctors are seeing these cases all over the world. How many cases are we talking about here? Is there a sense of the scope of this? So I spoke to like 18 neurologists across the world, and their best estimate was usually in the thousands. We're

limited by who was actually able also to go see a neurologist who specialized in movement disorders. The neurologists all agree that it's very possible there are many kids who just went to their pediatrician or didn't receive help at all. And that's another big question is who got the care they needed and who didn't? Because it was such an unusual event. Okay, and then now go back to the TikTok videos for me, if you wouldn't mind. How do the experts start connecting all this to TikToks and these videos that these kids are watching on TikTok? So I spent the most time with Tamara Prinkshyme and Davide Martino in Calgary, and they really described in January 2021, when they got the sense that this

was happening across the world, it pretty quickly clicked that there must be some shared source. They are, I don't know how old they are, but they're not, you know, youth. So they immediately went and checked YouTube, and they didn't come up with much. And then Dr. Pringshine's teenage daughter was actually, I think like, mom, you have to go check TikTok. And they searched tics on TikTok and, you know, hundreds of videos came up. And I, and the way Dr. Pringshine described it is pretty quickly after seeing those videos, she had the thought like, that is the patient I saw today. And not, not literally that was the patient that she had seen, like, that is the patient I saw today. And not not literally, that was the patient that she had seen, but they're making the same motions. And they were

repeating the same words, which confirms that there was some shared phenotype that was that was spreading. Can you just describe what these videos are for me a little bit more? I'm just trying to wrap my head around around this. Yeah, I don't think there's even necessarily like one type of video. I mean, you brought up Evie Meg earlier. She's a girl, a very popular person with a TikTok account who does things like putting on her makeup with Tourette. Makeup is usually an activity. It's usually an activity that kind of calms my tics down because I'm so focused like when I when I do my art and uh baking with Tourette's and you know sort of there there's really like a broad I would say a broad scope of what these videos can look like

but they're they're pretty uh relatable I think. And, you know, the teenager Aiden, who I spent time with in Calgary, described, it's very open about talking about the condition and showing people what it looks like. And there's this element of, you know, intimacy there that I think Aiden described as very sort of alluring because you're it feels like you're connecting to someone who is sharing something with you that that would otherwise kind of cause shame. So just to be clear here, these videos on TikTok, they were created by these teenagers who were explaining their experiences with Tourette syndrome and then watched by lots of kids during the pandemic who, I guess, empathized. And then they, in turn, developed these Tourette-like symptoms? I think that's kind of an oversimplification only in the sense that, as you said earlier, I don't know how many millions of followers EB-Meg has, but certainly her videos have millions, many millions of views.

And we know that not all of those people went on to develop tics. So that's one of the questions that the clinicians have been left with now that the wave has sort of died down is why were some kids so susceptible, so sensitive to what they watched and others, you know, were fine and school had passed. And why did they think that is? Why did they think that some were more susceptible than others? So the Calgary group has actually been leading some of the research

to try to figure that out. They published last October, they published a detailed registry of cases in eight countries where they had very detailed data on each of the patients. And they were able to determine that, you know, an overwhelming majority of those patients had some underlying psychiatric issues. So I think it was most commonly anxiety, depression, there was high incidence of ADHD, autism, OCD. So these are kids that were already baseline struggling in some way. And layered on top of that, you have the pandemic and this, you know, pervasive, very profound anxiety and isolation that was shared, which is unusual. Like when else in the history of the world, I would say it's a very rare occurrence that everyone is experiencing the same feelings. And then layered on top of that, they might be

watching the same things. So it was kind of this very weird combination of events that led to those kids who were most sensitive to sort of have the conditions right for developing these types of tics. But it was obviously this period of very intense stress where challenging things were happening for a lot of people. Yeah. And especially we know teenagers, young people. Can you tell me more about Aiden, the teen that you met in Calgary and their story? Aiden is now 18, which was helpful. We went to their college together and they kind of had this whole episode in the rear view mirror in a way that was really helpful to hear about.

Aiden grew up in Calgary. They definitely had some anxiety in childhood, also had some small tics that came up in childhood when around the time that Rhonda, their mom, had recurring illness that was kind of a very turbulent time for the family. In middle school, Aiden came out as bisexual, did, you know, dance and drama, was sort of finding the things that they really liked. That also led to some very severe bullying. They described one really traumatic instance in which they were dragged by the ankles and kicked and cracked their head in the boys locker room, dragged into a shower. In high school, they had sort of found their niche a little bit more. They were definitely one of the drama kids. They came out as non-binary, began using they them pronouns.

But they also still had this, you know, aching sense of trying to figure out who they were, there was they had some stress around what felt right to them about their gender and their sexuality. There were there, you know, there are all the pressures that I think everyone who has gone through high school has dealt with. But with the added circumstances of their life and their anxieties. So when the pandemic hit and lockdown was announced, there was almost a sense of relief from Aiden that they could kind of hide from everything and, you know, fly under the radar with school and sort of spend all day drawing. They're an incredible artist and, you know, spend their time on TikTok. And when they were sent back to school, that's when all of the stress and

anxiety just came flooding back that they suddenly had to face again. And they were dealing with sensory issues, were unable to eat, were starting to have panic attacks. It was pretty quickly after the lockdown ended in Calgary that Aiden developed these very explosive tics. It was late February that their parents actually saw the explosion in tics for the first time and immediately took Aiden to the emergency room. Hi, it's Ramit Sethi here. Brought to you in part by National Angel Capital Organization, empowering Canada's entrepreneurs through angel investment and industry connections. Hi, it's Ramit Sethi here. You may have seen my money show on Netflix. I've been talking about money for 20 years.

I've talked to millions of people and I have some startling numbers to share with you. Did you know that of the people I speak to, 50% of them do not know their own household income. That's not a typo, 50%. That's because money is confusing. In my new book and podcast, Money for Couples, I help you and your partner create a financial vision together. To listen to this podcast, just search for Money for Couples. What did the experts tell you about what's happening in the brain that would allow something that's happening mentally to manifest itself in these seemingly uncontrollable physical reactions? There was actually a great neurologist in London who put it really well that, you know, we all know at some level that our minds can make our bodies do things. If we feel anxiety, we might start sweating or our stomachs might turn, you know, or if you cry, that is a physical symptom that is, you know,

tied to something that is going on in your brain. The this neurologist in that is, you know, tied to something that is going on in your brain. The neurologist in London said, you know, we all recognize that the mind can make the body do things. But when it's these more elaborate or unusual symptoms like seizures or like tics, then we think that, you know, how on earth can the brain make the body do that? And it just can, in the same way that it can do those more simple things that we understand. So it's really the way we sort of divide mind and body is not really accurate. You know, the mind is a part of the body, and it can produce these very real physical symptoms. And when they're very debilitating, you know, like Aiden experienced eventually, then they are in the category of being what we now call functional disorders. And I want to come back to Aiden in a moment, but these functional disorders,

it's probably worth us talking about the fact that they're not new, right? Like TikTok is relatively new, but this idea of people who spend a lot of time together starting to act like each other, is it right? And how far back in history do cases like these go where whole communities or many members of a community are suddenly affected by mysterious symptoms? Yeah, so these illnesses have been with us for forever, basically. I mean, I spoke with a medical sociologist who has sort of scoured historical records and found 3,500 cases of these types of illnesses going back to the Middle Ages. You know, it's something that our brains can do. It's hardwired within us. You know, there were many outbreaks in convents. I think he found like hundreds of cases of outbreaks in convents where different

symptoms would manifest. There was a very well publicized case in the early 2000s of asylum seekers in Sweden who would suddenly go into these catatonic states. The children of these asylum seekers would go into these catatonic states lasting like months to years where they would be completely unresponsive. In Sweden, there's a consensus among health workers that the children who are vulnerable are those who have witnessed extreme violence. More than 400 cases were reported between 2003 and 2005. The case that every neurologist that I spoke with for this story brought up was actually this outbreak that happened

in Western New York in a small town called Leroy. One school, 12 teenage girls, and a very disturbing medical mystery. Uncontrollable twitches and tics developed overnight, and no one knows why. Basically, a cheerleader woke up one day and was having these very dramatic twitches. Soon after that, her best friend

started to twitch. And it sort of worked its way through the social hierarchy at the high school until it impacted eventually 18 girls, one boy and one adult. And at the time, there was, you know, there wasn't social media, there was a lot of TV coverage and national sort of fixation in the US on this outbreak and what was going on. And there was a lot of suspicion that maybe there was some sort of toxic waste in the water in the town, or, you know, that there might have been a virus, but then, you know, you'd quickly ask why would a virus just hit these girls and not boys. The neurologists who were actually treating these girls knew that there was a lot going on at home for each of them. They had had cases of very serious trauma or family illnesses.

They were very under stress and some of them had been for a very long time. This was an example of a group of kids who actually really knew each other, saw each other every day and often had, you know, deep connections with each other getting sick. And what's different with the TikTok tics is suddenly having connections on social media, which is a very different way of having connections with people can, you know, sort of do the same thing. Yeah. And I don't know how you would respond to this, but it seems even more alarming to me because clearly it has the potential to spread much further, right, than a small community. Yeah, I think that's true. I think the caveat there is the pandemic really was this really unique set of circumstances where we were all watching the news, we were all stressed about the same thing for a period of time. And so there was

sort of this shared experience that people were just on the same page in a way that they aren't typically in day-to-day life. Certainly neurologists think that other outbreaks like this will happen and that social media is absolutely going to be a part of that. But will it happen on this scale? It's harder to know because the pandemic really did set the stage for something like this. Just to end this conversation, I'm hoping we can go back to Aiden. You mentioned before that this experience was in the rearview mirror for them, right? And how did that happen?

Yeah. So, I mean, I feel like I've focused a lot on the sort of scarier parts of these functional disorders. lot on the sort of scarier parts of these functional disorders, the really good news is that once these disorders are diagnosed as being functional, there's actually a really good prognosis. And Aiden is a great example of that. You know, they were actually pulled out of school for six months until they got into this intensive somatic rehab program at Alberta Children's Hospital. They went through intensive therapy where they were able to sort of start working through the things that had happened in their past and begin to identify their anxiety, which they had never done before, and actually identify it and learn

how to regulate it. They were put on antidepressants, they deleted TikTok, and their parents were put in group therapy too with other parents of children with these functional disorders. The parents were really encouraged to not respond so much to the symptoms to sort of take away the meaning and the power of the symptoms and to slowly start to reintegrate Aiden back into their life. And so Aiden went back to school, you know, they were put on an individual performance plan where they had more time on tests and, you know, could leave the classroom when they needed to. But the expectation was you're going to, you're going to do a little bit of school. You can't sort of exit from your whole life. This is part of you getting better

is re-engaging with the parts of your life that give you meaning. And Aiden actually ended up graduating on time. They are now a freshman at the University of Calgary studying art. They haven't had a tick in a year. And it's, I mean, it's really shocking. It was really shocking to me watching the videos and when I was spending time with them in Calgary where Aiden was, you know, absolutely unable to do anything because their ticks were so explosive and so relentless to, you know, I spent four days with them and I didn't see them tick once. And they are thriving in school and they are certainly still working on the stuff that they had had to start working through as part of their treatment to get

better. But they've really come out on the other side with a deep perspective on what their struggles are and recognizing them and sort of working through them more actively. I'm really glad to hear that. And, you know, is it fair for me to say that there's a similar story with a lot of the other kids that had been diagnosed with this as well. Yeah, so Aiden was a particularly severe case, but the neurologist that I talked to said that most of their patients had gotten better. Again, the prognosis for this is quite good. You know, for the ones that haven't, and there are certainly kids that haven't gotten better, a lot of them are ones where either the kid or the family or both have refused to accept the functional diagnosis. Some people are

still view that in a little bit of a stigmatized way that it Oh, it means that there's, you know, something wrong with me mentally or psychologically, and sort of won't accept that and keep asking for more medical tests to find the cause of the problem. And, you know, the first step to getting better the way that Aiden did is accepting that functional diagnosis and accepting that the psychological and environmental roots of the problem. There are other kids who have actually gone on to develop other functional disorders that aren't functional tics. So, you know, functional seizures, paralysis. And you can see this on TikTok too, if you go look, look around for some of the kids who

have the tics. So it is definitely overall a kind of happy story. Like a lot of these kids really did get better. And they did so by putting in work to address the underlying issues that were problems for them. The other thing is that the pandemic, you know, we have entered a new stage where kids are back to school and are engaging with their lives in a way that they absolutely were not able to, you know, in 2020 and 2021. But yeah, there are still some kids who are suffering and some adults, too, who are suffering. So I don't want to be too rosy about the picture here. Azeem, thank you so much for this. I learned a lot today. This is really interesting. Thanks so much for coming by. Yeah, thank you. All right, that is all for this week. Frontburner was produced this week by Shannon Higgins, Rafferty Baker, Simi Bassi, Derek Vanderwyk, Lauren Donnelly, Sam Conard, and Jodi Martinson.

Our intern is Jack Wanen. Our sound design was by Sam McNulty and Mackenzie Cameron. Our music is by Joseph Chabison. Our executive producer is Nick McCabe-Locos. And I'm Jamie Poisson. Thanks so much for listening, and we'll talk to you next week. For more CBC Podcasts, go to cbc.ca slash podcasts.