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The Girls Who Caught Tourette's from TikTok

The mysterious outbreak of tics that spread around the world.

Key points

  • Neurologists have observed a strange malady that appears to be spread by social media.
  • There has been a surge in young women exhibiting Tourette's-like tics during the pandemic.
  • This outbreak of tics highlights the power of social influencers.

Since the COVID-19 pandemic began, there has been a surge in the number of adolescent girls and young women presenting to neurology clinics with Tourette's-like symptoms (Müller-Vahl et al., 2021). Many of the victims had been incorrectly diagnosed with Tourette's syndrome prior to being seen and were being treated with medication. Tourette's is a neurological disorder that is typified by involuntary tics and the blurting out of offensive words and sounds. Neurologists were able to quickly determine that the subjects were not suffering from Tourette's, but psychogenic tics driven by anxiety. They refer to this condition as a Functional Movement Disorder, which is commonly associated with psychological stress.

RoBird/Shutterstock
Source: RoBird/Shutterstock

The sudden appearance of tics in young women and girls may resemble Tourette's, but it is distinctly different. For instance, Tourette's usually begins in childhood, presents in a waxing/waning fashion over years, and is about four times more common in males. The onset of tics in the young women was sudden and explosive with a rapid progression of motor and vocal tics. Motor tics are involuntary muscle contractions while vocal tics involve the involuntary uttering of sounds.

The power of social media to spread contagion

A consensus has emerged among neurologists that social media has played a pivotal role in the outbreak, with some researchers referring to the surge in cases as the "TikTok Tics." Many of their patients reported that prior to the sudden onset of tics, they had been watching and sharing videos of social influencers claiming to be suffering from Tourette's. During the pandemic, videos of people with Tourette's, or claiming to be experiencing the condition, have gained an enormous following on social media platforms such as TikTok and YouTube. London-based psychiatrist Dr. Isobel Heyman has been at the coalface of the surge and reports that many of her patients appear to “gain peer support, recognition and a sense of belonging” from being exposed to social influencers claiming to have Tourette's. She is convinced that the tics are being reinforced and maintained by the online attention that those exhibiting the tics are receiving (Heyman et al., 2021).

A historic shift

Throughout history, outbreaks of social contagion have typically spread in small, close-knit groups, most commonly in schools and factories. Investigators are often able to identify an index case—the first person to exhibit symptoms—which then spreads to other group members. Unbeknownst to the rest of the group, the index case is often suffering from a medical condition. There is a common saying in the social contagion literature that mass psychogenic illness is spread by sight and sound—that is, by hearing or watching others who are affected. But what would happen if outbreaks could spread over the internet and on social media sites by a virtual index case? This appears to be exactly what has happened in the current outbreak. It represents a major shift in the presentation of psychogenic illness. In the past, most episodes of mass psychogenic illness were limited to a specific location or community, but this is no longer true in the Internet Age.

The current outbreak of tics is not the first time mass psychogenic illness has been triggered by social media. In 2011, a strange affliction affecting over a dozen girls and one boy swept through Leroy High School in Western New York. The students exhibited twitching muscles, facial tics, and garbled speech. After the State Health Department diagnosed the cases as psychogenic in origin, one neurologist treating several of the girls noted the influential role of social media. “It’s remarkable to see how one individual posts something and then the next person who posts displays the same kind of movements, which are not only bizarre, they are not consistent with known movement disorders,” the neurologist noted (Bartholomew et al, 2012).

Keeping up with evolving technologies

The rise of new communication technologies has turned the world into a global village. In the future, we can expect more outbreaks of social contagion in which the primary vector of spread is the internet and social media. This trend needs to be monitored due to the potential for large-scale outbreaks over a much broader geographical region. The power of the internet and mass suggestion deserves to be monitored closely due to the potential to affect large numbers of people quickly, in every corner of the globe. Another challenge is the rapid evolution of new technologies, for as soon as we begin to gain a better understanding of the role of social media in spreading social contagion, those same platforms may change before the impact on users is fully understood.

References

Bartholomew, Robert E., Wessely, Simon, and Rubin, J. (2012). “Mass psychogenic illness and the social network: Is it changing the pattern of outbreaks?” Journal of the Royal Society of Medicine 105: 509-512.

Conte, Giulia, Baglioni, Valentina, Valente, Francesca, Chiarotti, Flavia, and Cardona, Francesco (2020). “Adverse mental health impact of the COVID-19 Lockdown in individuals with Tourette syndrome in Italy: an online survey." Frontiers in Psychiatry 11:583744.

Heyman, Isobel, Liang, Holan, and Hedderly, Tammy (2021). "COVID-19 related increase in childhood tics and tic-like attacks." Archives of Disease in Childhood 106:420-421. See p. 421. doi: 10.1136/archdischild-2021-321748.

Hull, Mariam, Parnes, Mered, Jankovic, Joseph (2021). "Tics and TikTok: functional tics spread through social media." Neurology Clinical Practice published online April 14, 2021. DOI 10.1212/CPJ.0000000000001082.

Müller-Vahl, Kirsten R, Pisarenko, Anna, Jakubovski, Ewgeni, and Fremer, C. (2021). "Stop that! It’s not Tourette’s but a new type of mass sociogenic illness." Brain, awab316, https://doi.org/10.1093/brain/awab316.

Pringsheim, Tamara, and Martino, Davide (2021). "Rapid onset of functional tic-like behaviours in young adults during the COVID-19 pandemic." European Journal of Neurology 2021;00:1–4. https://doi. org/10.1111/ene.15034.

“12 girls at NY high school develop involuntary tics; doc says it’s ‘mass psychogenic illness.’” The Washington Post, 20 Jan 2012.

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