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Tuesday, April 16, 2024

They Watched a YouTuber With Tourette’s—Then Adopted His Tics

Kirsten Müller-Vahl had a major mystery on her hands. It was June 2019 and Müller-Vahl, a psychiatrist at Hannover Medical School in Germany and head of its Tourette’s outpatient department, was being inundated by patients with tics unlike anything she had seen before. 


Not only were the tics complex in nature, involving several muscle groups, even more bizarrely the symptoms of the patients were remarkably similar. “The symptoms were identical. Not only similar, but identical,” she says. Although all had been formally diagnosed with Tourette’s by other physicians, Müller-Vahl, who has been working with patients with Tourette’s syndrome for 25 years, was certain it was something else entirely. Then a student came forward who knew where she had seen those tics before. 

All the patients were displaying the same tic-like behaviors as the star of a popular YouTube channel. Gewitter im Kopf (meaning ‘thunderstorm in the head’) documents the life of Jan Zimmermann, a 23-year-old from Germany with Tourette’s. The channel’s raison d’etre is to speak openly and humorously about Zimmerman’s disorder, and it has proven to be a hit, amassing more than 2 million subscribers in two years.  

Some of Zimmerman’s tics are specific. He can often be seen saying the phrases “Fliegende Haie” (flying sharks), “Heil Hitler,” “Du bist häßlich” (you are ugly), and “pommes” (chips). Other tics include smashing eggs and throwing pens at school. 

The patients that visited Müller-Vahl’s clinic were pretty much mimicking Zimmerman’s tics. Many also were referring to their condition as Gisela, the YouTuber’s nickname for his condition. In total, about 50 patients at her clinic presented symptoms similar to those of Zimmerman. Many patients readily admitted to having watched his videos. Zimmerman did not respond to a request for comment. 

Although the spectrum of symptoms of Tourette’s is wide, similar symptoms tend to crop up over and over, Müller-Vahl says. Classic tics are usually simple, short, and abrupt. They are mainly located in the eyes, the face, or the head, such as blinking, jerking, and shrugging. The syndrome typically manifests at around 6 years old, and much more often in boys—an average of three to four boys to one girl. What springs to mind when you picture Tourette’s—an uncontrollable urge to utter obscenities in public—is actually rare, she says. 

But if it wasn’t Tourette’s, what was it? According to Müller-Vahl, these patients were actually suffering from something called functional movement disorder, or FMD. This might present like Tourette’s, but where the latter has a neurological basis (although the root cause is not yet known, it is thought to be related to abnormalities in brain regions such as the basal ganglia), the cause of FMD is psychological. In FMD, the hardware is intact, but the software isn’t working properly, whereas with Tourette’s, the software is working just fine, but it’s the hardware that isn’t. People with FMD physically have the ability to control their bodies, but they’ve lost hold of the reins, resulting in involuntary, abnormal behaviors. 

For some patients, all their symptoms disappeared when Müller-Vahl explained that what they had wasn’t Tourette’s. For others, a course of psychotherapy improved their symptoms significantly. Still, the sheer number of patients with the exact same symptoms puzzled Müller-Vahl and her colleagues. 

Mass sociogenic illness—also known as mass psychogenic illness or historically called mass hysteria—spreads like a social virus. But instead of a perceptible viral particle, the pathogen and method of contagion is invisible. Symptoms spread by unconscious social mimicry to vulnerable people, thought to be triggered by emotional distress. (It isn’t included in the Diagnostic and Statistical Manual of Mental Disorders, although it does bear a keen resemblance to conversion disorder, which entails the “conversion” of emotional distress into physical symptoms.) Historically, mass sociogenic illness affects women more than men. The reason why is unknown, but one hypothesis is that females generally tend to have higher levels of anxiety and depression, which could make them more susceptible to the illness.

Outbreaks of mass sociogenic illness are dotted throughout history. Perhaps the most famous began in October 2011, in Le Roy, a tiny town in upstate New York, when a group of schoolgirls inexplicably developed Tourette’s-like tics, including sudden verbal outbursts and dramatic jerking movements. The outbreak was eventually determined to be a case of mass sociogenic illness. The story became the subject of a media frenzy at the time and was shared widely online, resulting in people who never met the girls coming down with the same symptoms. It was the first case of mass sociogenic illness to be shown to have spread through social media. 

Today, the reach of social media means that these outbreaks won’t be confined to a single school or community—they can reach far and wide to every corner of the world easily through a screen. In their paper published in the journal Brain, Müller-Vahl and her colleagues have come up with a new term to describe the phenomenon: mass social-media-induced illness. 

Robert Bartholomew, a sociologist in New Zealand who has been studying mass sociogenic illness for decades, was the first person to speculate that it could spread through social media, as in the case of the Le Roy girls. He thinks this outbreak is no different, and not the last. “I believe we are seeing a major shift in the presentation of mass psychogenic illness—where the internet and the mass media are the primary vectors,” he says. The phenomenon, he says, has morphed over the centuries to reflect the fear of the times. In the 17th century that was witches. Today, it’s technology.  

Social media, particularly platforms such as TikTok, has become a place of refuge for people with Tourette’s. They can share their symptoms with their audience, feel part of a community, and receive support from peers and fellow sufferers. And the videos are popular; the hashtag currently has 4.6 billion views. At the same time, the uptick in these communities has had a peculiar effect. Recently, there have been a flurry of reports of people ostensibly “catching” these behaviors through consuming them online. A slew of articles point to an increase in teenage girls who developed tic-like behaviors through watching TikTok—so much so that the behaviors have been nicknamed “TikTok tics.” 

In March 2021, physicians described in The British Medical Journal an influx of young females to their clinics presenting with tic-like symptoms. The number of expected referrals had doubled in the past few months, they reported. In a paper published in April 2021, a group of clinicians in Texas reported that their own clinic had experienced a 60 percent increase in patients presenting with similar tic-like behaviors during the pandemic. One academic article dubbed the phenomenon “a pandemic within a pandemic.”

But the danger of a Tourette’s misdiagnosis is hard to dismiss. Medication for Tourette’s has a number of pretty hefty side effects—weight gain, sedation, social withdrawal. And for patients who actually have Tourette’s, this trend makes them feel misunderstood, says Müller-Vahl—they’ve been told by peers to stop complaining, because their tics are mild in comparison to Zimmerman’s. 

In Alberta, Canada, Tamara Pringsheim and Davide Martino went through the very same experience at their clinic. Since the onset of the pandemic, the two neurologists at the University of Calgary have seen a rush of young people with a sudden onset of tic-like behavior. Since the clinic opened in 2008, the referral rate for cases of Tourette’s had been pretty steady—about 200 a year. 

Between May 2020 and May 2021, they received an extra 100 referrals. In the summer of 2020, a wave of young people began to show up with the same symptoms. That number began to pick up, and by Christmas time, it had reached “astronomical proportions,” Pringsheim says. Some of the patients were displaying the same repertoire of tic-like movements, including clapping and thumping their chest, and vocal tics like “beans,” “knock knock,” and “woo hoo.” Trying to identify a mutual trigger, Prigheim went searching online, and her teenage daughter pointed her in the direction of TikTok. 

“They had a lot of clinical differences from what we typically observe in the onset of tics,” says Martino. The patients were young, almost exclusively female. The speed of onset was also shockingly rapid; Tourette’s tends to develop slowly, with symptoms creeping in over months or a year. In these patients, their symptoms were appearing over a period of hours or overnight. “I have never seen this level of distress in young people in my career,” Pringsheim says. “It’s alarming.”

The pandemic has exacerbated mental illness amongst teenagers. In the UK, rates of mental health problems in children and young people rose by almost 5 percent between 2017 and July 2020. Widespread anxiety and fear combined with prolonged isolation plausibly creates the perfect breeding ground for an illness just like this one. And the world locking down has forced people to stay in their homes, and on their phones. 

Pringsheim and Martino reckon the pandemic has played a big role; the patients they saw were highly distressed and scored high for anxiety and depression. “I don’t know that this would have happened if there wasn’t a pandemic going on,” Pringsheim says.

Both Bartholomew and Müller-Vahl point fingers at social media. “Similar outbreaks like this have been going on for at least a decade—and we didn’t have a pandemic,” Bartholomew says. “I think that being in a cloistered lockdown environment, and spending more time on sites such as YouTube and TikTok, have likely intensified the effects of these sites on young people.” Müller-Vahl agrees: She had been seeing these patients for over two years, before the world had ever heard of Covid-19. But she concedes that the pandemic may have accelerated the outbreak. 

The pandemic will, eventually, fade. But social media isn’t going away anytime soon, which means there are more outbreaks to come. “It looks like this new trend is here to stay,” Bartholomew says, “so we need to study these cases.” 

This story originally appeared on WIRED UK. 

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