Michelle Wacek was a TikTok fan years ago, back when the video-sharing app was called Musical.ly. “I went on it for a laugh,” she says. “And then I got sucked into the vortex.” She took part in lip-syncing challenges, and followed the influencer Evie Meg, who raises awareness about Tourette syndrome among her 14 million followers.
In April 2020, Wacek was messing around in the kitchen when her husband accidentally clipped her in the face. The then 25-year-old chef had a panic attack. “It triggered a PTSD response from a previous abusive relationship I was in,” she says.
Over the next few weeks, Wacek noticed that she was having tics. “They were just little noises,” she says. “Nothing to write home about.” She would scrunch up her nose, or huff. The tics escalated from sounds into words and phrases. Then the motor tics kicked in. “I started punching walls and throwing myself at things,” she says. By July, Wacek was having seizures. She had to stop work. “Being a chef with seizures is not safe at all,” she says.
Her GP referred her to a neurologist, who diagnosed her with functional neurological syndrome (FND). People with FND have a neurological condition that cannot be medically explained, but can be extremely debilitating. “In a general neurological clinic, around 30% of the conditions we see are not fully explainable,” says Dr Jeremy Stern, a neurologist with the charity Tourettes Action. In Wacek’s case, FND manifested in verbal and motor tics, not dissimilar from how Tourette syndrome appears to lay people, although the two conditions are distinct.
Wacek has up to 20 seizures a day and currently has to use a wheelchair. Like Meg, she is now a TikTok influencer, using her platform to raise awareness of FND. “Knowing that I am going through the same crap as other people out there makes me feel better,” Wacek says. “Without all these platforms, I would be quite isolated.”
This month, Wacek’s Facebook groups and online communities lit up. The source: a Wall Street Journal report about the rise in young women developing sudden-onset tics that doctors thought could be linked to TikTok. The article prompted a swift backlash from many in the Tourette’s and FND community. “I read the article and thought it was a load of crap,” says Wacek. “TikTok is not giving people Tourette’s.” The fact that she followed Meg before developing tics herself, says Wacek, is a “coincidence”.
But there is a rise in young women presenting with unexplained tics that come on suddenly, far later in life than the usual presentation for Tourette syndrome. Some of these young people are social media users, some are not. What on earth is going on?
The neurological journal Brain isn’t typically the locus of international controversy. But times are changing. “Journals are more open-access than ever before,” says Dr Seonaid Anderson, a research psychologist and neurodiversity consultant who specialises in Tourette syndrome. “People with neurodiverse conditions can access what is being written about them far more freely. Webinars often feature patients in the audience.”
In August, Brain published a paper with the incendiary headline: “Stop that! It’s not Tourette’s but a new type of mass sociogenic illness”. In it, clinicians from Hannover Medical School in Germany speculated that a mass sociogenic illness (MSI) that resembled Tourette’s but was not Tourette’s, was spreading among German teenagers. A sociogenic illness, explains researcher Dr Kirsten Müller-Vahl, “is when people who are in close contact develop similar symptoms, but without any underlying cause”.
A mass MSI outbreak was seen in the UK at a Lancashire school in 2015, where 40 pupils received medical treatment for dizziness thought to be brought on by anxiety after a handful of children fainted during an Armistice Day service in a warm assembly hall. MSI is currently in the news as a possible cause for the mysterious Havana syndrome, which is affecting diplomats at US bases across the world. But experts did not believe MSI could be spread via social media – until the Hannover team’s research.
MSI ripples outwards from a “patient zero”, infecting the people around that person in waves of anxiety-induced illness. “People now use social media so intensively that it more or less replaces our normal context,” says Müller-Vahl. “You can be in close contact with someone via social media, it can be very emotional, and you can identify with that influencer. We believe that spread can happen solely via social media.” In this case, Müller-Vahl identifies this patient zero as a German YouTuber, Jan Zimmerman, who has Tourette syndrome and runs a channel with 2.2 million subscribers.
In 2019, Müller-Vahl says, teenagers began to present at her clinic with functional Tourette’s-like symptoms, a subset of FND. Typically, Tourette’s starts during childhood, with six the average age of onset. But the mean onset age of Müller-Vahl’s patients was 19. Their symptoms also escalated more quickly than typical Tourette’s. In all, since 2019 Müller-Vahl has seen nearly 50 young people; all of them confirmed that they watched Zimmerman’s channel. She believes FND was spread via social media contagion, in much the same way that a fainting fit ripples through a packed school hall.
Müller-Vahl is not accusing young people of faking illness. “I know no expert who feels this is malingering,” she says. But the title of her paper – Stop That! – was interpreted that way. “People criticised our title because it was a bit provocative,” says Müller-Vahl, sounding exasperated. “But we are not saying to the patients: ‘Stop that.’ It’s addressed to medical doctors. Stop diagnosing this as Tourette’s, when it’s FND.”
Be that as it may, says Anderson, “It’s easy for the public to think people are saying that you should stop your tics. We want people to get away from that view, which is linked to the dark days of previous years.”
The phenomenon Müller-Vahl’s team observed – young people with sudden-onset tics, thought to be FND and possibly linked to social media exposure – has been observed by clinicians globally. With the exception of Müller-Vahl’s own study, most of those with the symptoms are female. “We’ve seen groups of teenage girls from the same school who develop almost identical tics,” says Dr Tammy Hedderly, a paediatric neurologist at Guy’s and St Thomas’ NHS trust. Stern has likewise heard of outbreaks in UK schools.
“They shout ‘Baked beans!’ or hit their parents on the head,” says Hedderly. “When a 15-year-old girl walks into my clinic shouting ‘Baked beans!’, my first question is: ‘Have you been watching this influencer? Because I know all the names of the influencers. So it’s important to recognise that social media does play a role and the scale of the problem is wide, across the UK.”
In the US, Dr Caroline Olvera, a neurologist, has also seen an increasing number of young people, mostly girls, presenting with sudden-onset tics. She wrote a research paper based on her study of more than 3,000 videos of TikTok Tourette’s influencers, observing: “Despite our study cohort spanning different countries, 67.9% of the cohort mentioned their TikTok tics were from other content creators, and the majority had the same vocal tic.”
Olvera’s research has not gone down well in some quarters. “I’m frustrated,” she says. “I’ve tried to stop reading a lot of what is written out there.” She’s received “lots” of angry emails. “My colleagues have had a positive response to my research,” she says, “but I don’t know if it’s been perceived appropriately by the public. The last thing I would want is for my patients to walk away from this thinking that their disorder is fake or not worthwhile.”
Much of the controversy arises from the misapprehension that doctors are accusing young people of faking Tourette’s for attention, or arguing that TikTok is giving people Tourette’s. Neither claim is true. “What the media has boiled it down to,” says Olvera, “is that if it’s not Tourette syndrome, it’s fake. But just because it’s not Tourette syndrome doesn’t mean it’s fake. This is a real condition. Even though it’s not typical Tourette’s, it’s very disruptive and stressful.”
Meg Jones, 17, began experiencing tics in February this year. “I was really stressed out,” she says. Her puppy was sick, and Meg was behind at school. “I had teachers phoning me non-stop, asking me where my work was,” she says. “At one point I broke down.” The tics started with neck jerks and escalated within weeks. Meg would hit her friends and head-butt things. By May, she was having seizures.
Meg was recently diagnosed provisionally with Tourette’s – over the phone. “The call was less than five minutes long,” she says. “The neurologist didn’t say much. He just said, ‘I believe you have Tourette’s.’” (A diagnosis of Tourette syndrome requires a person to have had verbal and motor tics for at least one year.) She is on the children and adolescent mental health services (Camhs) waiting list. “If I was to look at my life and think of all the things I can’t do at this point, and how uncertain the future is,” says Meg, “I would become extremely depressed.”
After she developed tics, Meg started to follow TikTok influencers with Tourette’s. She is a fan of @UncleTics, a New Zealand influencer with 3.2 million followers. “Finding people who are going through the same thing helps a lot,” she says. “But I also noticed that watching other people tic made me tic.” She picked up specific vocal tics from these TikTok accounts, such as blurting out the word “lesbian”.
It is widely accepted by experts that tics are “suggestible”, meaning that people with tics often trigger new tics in each other. “We know that when people with Tourette’s get together in support groups,” says Anderson, “they may pick up each other’s tics, although it’s usually for only a few hours.” It is not that TikTok is giving people tics; rather, it may be triggering tics in people who are searching social media for information about their condition. “Social media can’t create tics,” Anderson argues. “What it might do is trigger someone who is already susceptible.”
“The safety and wellbeing of our community is our priority,” a TikTok spokesperson says. “We’re consulting with industry experts to better understand this specific experience. We’re proud that people living with Tourette syndrome have found a home on TikTok where they can fight stigma, find community and express themselves authentically.”
Meg, meanwhile, isn’t consciously imitating the influencers she sees on TikTok. “I’ve had people at my school tell me that I’m an attention seeker,” she says. “But if they were put in my shoes, they’d know that’s not true … Imagine straining your neck for hours a day and not being able to move. As much as I find myself hilarious and laugh about it with my friends, I would 1,000% choose not to have this over having the attention, any day.”
Suggestibility can trigger tics even in the classroom. Chloe (not her real name), 14, received a diagnosis of Tourette syndrome in July. “The tics started 18 months ago,” says her mother, Jill (also not her real name). “But she’d been suppressing them, until everything came out in September last year. The stress of the pandemic made it too difficult to hold them in.” Chloe had to take time off school this year. “During the time she was off,” says Jill, “another girl in her class developed tics.” Now both girls are in the same classroom, which poses a problem. “They set each other off,” Jill explains.
It should not be surprising that the stress of the pandemic is causing young people to present with tics, which are often exacerbated by stress and anxiety. It should also not be surprising that social media use may worsen tics in people with an underlying predisposition, in the same way that social media is known to correlate with other negative mental health outcomes. Stern advises patients to limit social media exposure for this reason.
What is surprising, and dispiriting, is the extent to which stigma persists around little-known conditions such as FND, and the lack of support available to people with tics. “Regardless of why these tics are happening,” says Jess Thom of the blog Tourette’s Hero, “whether they are functional (FND) or Tourette’s, the symptoms are real and not the fault of these young people who are in need of support that doesn’t really exist.”
NHS mental health services are at breaking point due to a post-pandemic backlog. “I’ve heard of families waiting between two and four years to be seen by Camhs,” says Hedderly. Chloe is on a two-year waiting list to see a neurologist. Wacek is waiting to see a neurotherapist; in desperation, she called 111 recently, only to speak to a brusque and unsympathetic doctor. “He said I was doing it to myself,” she recalls. “Which made me feel worse, which made me have more seizures.”
In Wales, there is currently no paediatric neurologist who specialises in Tourette syndrome. “It’s shocking,” says Helen Reeves, 42, from Pembrokeshire. Her 13-year-old daughter developed sudden-onset tics in August. “You go to the paediatrician with symptoms and they ask me what I think it might be.” Reeves is campaigning for better provision: a petition she started has more than 7,000 signatures. It is a similar story in much of the UK. “There are hardly any pathways through to consultants,” says Paul Stevenson, 58, of Berwick-upon-Tweed. His son developed sudden-onset tics last year. “All these people are going through this traumatic period, and doctors are not fully understanding what is going on.”
In the absence of specialist support, young people can only hope their tics become more manageable with time. A couple of weekends ago, Meg went away with friends to Cardiff. It was the first ordinary thing she has managed since her tics came on. “That was a major thing,” she says. “To be a normal independent teenager.” Next year, her friends will apply to university. She wants to apply too, but is worried. “What if I had a seizure and no one knew what was going on?” says Meg. “The unknown is scary. But I don’t want to be afraid of my life.”