TikTok Tics: A Pandemic Within a Pandemic

ABSTRACT

Background

TikTok is a social media platform where users create and share videos. During the COVID‐19 pandemic, the use of this site greatly expanded. Tic and Tourette syndrome content also increased dramatically along with the number of patients with tics in neurology clinics.

Objectives

We compared the phenomenology of “TikTok tics” to typical tic disorders. We chose to analyze the most widely viewed videos and therefore focused on the most popular content creators.

Methods

Videos with the keywords “tic,” “Tourette,” or “tourettes” were reviewed to identify content creators between March 11, 2020 and March 30, 2021. We performed a quantitative assessment of TikTok tics as well as a descriptive analysis of the entire series of videos of each content creator.

Results

The mean age of the cohort was 18.8 years old, and the majority were women. Unlike the predominance of facial movements in typical tics, arm movements were most frequent. Average tics per minute was 29, and almost all recorded TikTok tics were severe, causing significant disability. Whereas coprolalia and self‐injurious behavior are only infrequently encountered in typical tic disorders, they were present in the overwhelming majority of TikTok subjects.

Conclusions

TikTok tics are distinct from what is typically seen in patients with Tourette syndrome, although share many characteristics with functional tics. We believe this to be an example of mass sociogenic illness, which involves behaviors, emotions, or conditions spreading spontaneously through a group. A modern clinician needs to remain abreast of social media sources as knowledge of media content is essential in managing patients in the current environment.

TikTok is a social media platform where users create and share videos through personalized profiles or pages. ¹ Between January 2018 and August 2020, its number of monthly active users grew by 800% to a total of 100 million in the United States and 700 million globally. ² In the United States, users between the ages of 10 and 19 accounted for 25% of these accounts. ³ During the COVID‐19 pandemic, tic‐related and Tourette syndrome–related videos have been gaining popularity on this site among these young users. Within a 3‐week period in March of 2021, views of videos with the keywords #tourette and #tic increased by 7% to a total of 5.8 billion views. ¹ Numerous global news articles have commented on the new popularity of tics and Tourette syndrome on this platform. ⁴ , ⁵ , ⁶ , ⁷

The aim of this study was to explore the phenomenology of these “TikTok tics.” Given that both TikTok and neurology clinics have seen an abrupt increase in tics during the COVID‐19 pandemic, ⁸ , ⁹ , ¹⁰ our goal was to compare these popular TikTok tics to what is typically seen in neurology clinics. We chose to analyze the most widely viewed videos and therefore focused on the TikTok tics of the most popular content creators. We also descriptively analyzed these movements and vocalizations.

Methods

Search Strategy

We first searched for hashtags on TikTok that included the words “tic,” “Tourette,” or “tourettes” in the stem. Hashtags are keywords or phrases that can be added to videos to describe their content. Videos can then be sorted by hashtags, and users of the platform can search for videos based on these hashtags or by individual creators of videos.

For our inclusion period, we randomly selected the 48 hours between 00:00 and 24:00 military time on March 30 and 31, 2021, and reviewed the 50 most viewed videos under each of these hashtags. Of these, we identified the creators of videos who had more than 100,000 followers or subscribers. To be included in this analysis, subjects had to include any of the selected hashtags in more than 1 video, their first use of these hashtags had to be between March 11, 2020 (date of COVID‐19 travel ban and World Health Organization declaration of COVID‐19 as a pandemic) and March 30, 2021, and had to be English speaking, although inclusion was not limited by country. We then analyzed the TikTok tics both of the most popular video of each subject and the entire series of videos from each subject between these dates.

For this study, we were unable to obtain subjective history from subjects about their tics such as premonitory urge, suppressibility, and relief. We therefore defined tics phenomenologically, according to the most widely accepted definition for tics, as sudden, rapid, recurrent, nonrhythmic, stereotyped movements or vocalizations. ¹¹

Video Analysis

Quantitative Analysis

For each popular subject, we completed a quantitative assessment of their TikTok tics in their most popular video based on the Rush Video‐Based Tic Rating Scale. ¹² This scale is a method of quantifying the number of motor and vocal tics per minute as well as the anatomical distribution of tics. In addition, tic severity or intensity is rated from absent (0) to severe. ⁵ The most popular video was determined by the largest number of views. Videos included had to be a continuous recorded scene where the subject could be seen for the entire length of video. One minute of continuous video was used for the assessment, and if videos were less than 1 minute in length, data were extrapolated.

Descriptive Analysis

The entire series of videos of each popular subject as well as their written profiles were reviewed. The content of videos as well as these profiles were used to obtain basic demographic information and medical comorbidities. Patterns of TikTok tic phenomenology as well as terminology common to subjects was identified.

Statistical Analysis

Data were collected and analyzed in an Excel spreadsheet in Microsoft Excel (Redmond, WA) using descriptive statistics.

Results

A total of 26 hashtags included the words “tic,” “Tourette,” or “tourettes” (see Fig. 1). A total of 36 subjects with more than 100,000 subscribers used these hashtags, and of those, 29 subjects used them in our inclusion period. One of the subjects was excluded as he had deep brain stimulation implantation prior to March 11, 2020, per his disclosure in his videos, and ultimately 28 subjects were included in the final analysis.

FIG. 1.

Overview of the screening and inclusion process. DBS, deep brain stimulation

Cohort Demographics

Subject age, gender identity, and country of residence were determined by disclosures of each subject on their profile or in videos. Of the 17 subjects with age disclosures, the mean subject age was 18.8 years old (range, 14 to 28 years old). All 28 subjects disclosed gender: 64.3% identified as female, 17.6% as male, and 14.3% as nonbinary. The overwhelming majority of the cohort was from the United States and the United Kingdom.

The total number of subscribers for all 28 subjects was 35.9 million (mean, 2.5 million; range, 143,500–12.7 million).

Quantitative Analysis

The total views of all 28 videos included in the analysis was 331 million (mean, 11.8 million; range, 282,000–44.2 million).

All of the most popular videos contained movements and vocalizations that we considered within the operational definition of the study for tics. Only 3 videos contained mild TikTok tics, whereas the rest of the videos had moderate to marked movements.

Although tics are typically most common in the eyes, head, neck, and shoulders, ¹³ , ¹⁴ in our cohort's most popular videos, arm movements were most common compared with any other body area. Simple, mild, and infrequent Tiktok tics were rare (see Table 1). The average vocal tics per minute was 23, average motor tics per minute was 35, and the average total tics was 29 per minute in comparison with the average 0 to 13 tics per minute in typical Tourette syndrome. ¹⁴ , ¹⁵ , ¹⁶ Our cohort's frequent arm tics often caused significant interference with activities such as cooking to the point that they would not be able to complete recipes without assistance.

TABLE 1.

Comparison of TikTok tics to historical data

TikTok videos			Literature
Body distribution	Percent present in videos	Average tics per minute	Lifetime prevalence
Eye	71.4	6	94%–100% 13 , 14 , 15
Head, neck and shoulder	89	7.25	89%–92% 15
Arms	85.7	11	51%–80% 15
Legs	1.4	0	40%–55% 15
Trunk and pelvis	0.89	0	41%–54% 15
Coprolalia	50	2	8%–14% 13 , 14 , 15 , 16
Echolalia	0	0	20%–44% 15
Vocal tics	100	23	87% 17
Motor tics	100	35	100% 17
Total tics		29	0–13 per minute 18 , 19 , 20

Descriptive Analysis

Over 1500 videos in total were reviewed. On average this was 25–100 videos per subject.

TikTok Tic Phenomenology

In reviewing the series of videos under each subject, TikTok tics were overall severe. 89.3% Of the subjects, 89.3% had movements that were disruptive to activity versus 12% to 29% in the literature. ¹⁷ A total of 64.3% had “tic attacks” in which severe movements occurred repeatedly over minutes to hours, and 39.3% of the cohort had to go to the hospital as the movements could not be suppressed. This group of subjects would meet the criteria for malignant Tourette syndrome, which is defined as having ≥2 emergency visits or ≥1 hospitalization for their tics or behavioral comorbidities. ¹¹ However, this is typically encountered in only 5.1% of patients with Tourette syndrome. ¹¹ Of our cohort, 93% had coprolalia or copropraxia versus 8% to 14% in the literature18, 19 and 85.7% had self‐injurious behavior versus 14% in literature. ¹⁸ The self‐injurious behavior generally caused significant injury, with many users showing bruises or abrasions and themselves crying as a result of these injuries.

Both vocal and motor TikTok tics were similar among users. In fact, 67.9% had videos stating that they had developed at least 1 new movement or vocalization from another user on TikTok. A total of 53.6% had the same vocal tic of saying “beans,” and 3 users had the same complex vocal and motor tic mimicking a character from a popular children's movie.

Among each user with multiple recordings, new TikTok tics appeared frequently in their sequential videos. Although stereotypy was seen in individual videos, over the entire series of videos, TikTok tics were not stereotyped or consistently repetitive in anatomical distribution. Of the cohort, 53.6% explicitly stated that they had developed “new tics” and had videos showing these new movements.

Medical Comorbidities

Some users disclosed specific medical diagnoses in videos or within their profiles that they have received. Of those that disclosed, 32.1% were diagnosed with seizures, 14.3% with functional neurological disorder, and 57.1% with a psychiatric condition (depression, anxiety, or bipolar disorder).

TikTok Tic Etiology

Of the subjects, 64.3% added to their video train explanations that they understood that some viewers or TikTok followers considered their TikTok tics to be “fake.” In defense of the legitimacy of their TikTok tics, these subjects often cited a perception that these critics assumed they were creating videos solely for “clout” or recognition on the platform given the new found popularity of tics and Tourette syndrome on TikTok. In all of these cases, subjects adamantly denied this denunciation of their involuntary movements, and to combat this belief, a minority of users had videos of supposed doctor's notes confirming their tic diagnosis. In this same context, however, 64.3% of subjects cited were selling merchandise on their TikTok account related to their TikTok tics or could be contacted for paid appearances.

Discussion

TikTok tics were overall severe and frequent, on average occurring 29 times per minute. Complex arm movements were common and caused significant disability by disrupting regular activities, such as baking. Coprolalia, copropraxia, and self‐injurious behavior were present in the overwhelming majority of subjects. The majority of our cohort was female with a mean age of 18.8 years old. Our cohort, both epidemiologically and phenomenologically, was homogenous and shared these unique characteristics.

Although distinctive from the archetypal patient with Tourette syndrome, TikTok tics do share many similarities with functional (or psychogenic) tics. Functional tics, as in other functional neurological disorders, tend to occur in female patients versus the well‐established male predominance in Tourette syndrome. ¹⁸ , ²⁰ , ²¹ , ²² , ²³ , ²⁴ , ²⁵ , ²⁶ , ²⁷ Functional tic patients also tend to be older, whereas the onset of organic tics is typically 5.6 to 7.3 years. ¹³ , ¹⁸ , ²⁰ , ²¹ , ²⁸ , ²⁹ Tics typically improve and resolve in adolescence ²⁸ , ³⁰ and extreme exacerbations in adolescence are uncommonly encountered in typical tic disorders. In addition, those with functional tics and other functional neurological conditions have an increased incidence of mood disorders as in our study population. ²¹ , ²⁴ , ²⁵ , ²⁶ , ²⁷ Phenomenologically, functional tics rarely occur in the head and eyes and are overall complex, frequently disruptive to activities and insuppressible. ²¹ “Tic attacks” have also been previously described in this population. ¹⁰ , ³¹

There have been other reports of increased incidence of functional movement disorders during the COVID‐19 pandemic ¹⁰ , ²³ , ³² ; however, this literature is very limited at this point in time. Unlike our TikTok tics occurring and circulating in the context of the COVID‐19 pandemic, typical tic disorders with an abrupt and intense onset account for only around 5% of cases. ¹⁸ However, there have been similar instances of abrupt onset of phenomenologically similar abnormal movements that were later rediagnosed as psychogenic illness. In Le Roy, NY, 20 teenagers, the vast majority female, at the same high school developed acute‐onset tic‐like movements in October of 2011. ³³ , ³⁴ The story gained national attention, with the girls appearing on all major news networks, including ABC, NBC, FOX, and CNN. The movements significantly improved or resolved once school ended. ³⁴ In Western Nepal, 47 children, 78.7% of which were female, developed similar abnormal movements and other neurological symptoms during the span of a day. ³⁵ Similarly, the movements resolved within several months. In both cases, the etiology of these movements was believed to be conversion disorder or functional neurological disorder. Arthur Miller's classic drama, ³⁶ pits John Proctor in the same diagnostic dilemma in the context of 17th‐century New England.

These instances are thought to be examples of mass sociogenic illness, which is defined as “rapid spread of illness signs and symptoms affecting members of a cohesive group, originating from a nervous system disturbance involving excitation, loss or alteration of function, whereby physical complaints that are exhibited unconsciously have no corresponding organic etiology.” ³⁷ This definition implies that the illnesses seen in these instances are of functional (or psychogenic) etiology as may very well be the case in our cohort. However, these geographically isolated examples of mass sociogenic illness are no longer location confined because of the global reach of social media. 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 of the word “beans.” Although our inclusion criteria limited our analysis to English speakers, in our initial screening process we found videos from users in every continent with similar appearing movements and vocalizations to our cohort. Thus, the recent emergence of TikTok tics could even be considered a “pandemic.”

The societal and everyday life consequences of the COVID‐19 pandemic have contributed to a worsening of chronic neurological diseases even in those without COVID‐19 infections. ³⁸ The pandemic has been a source of trauma for the general public, possibly serving as a trigger for TikTok tics. ³⁹ There have also been recent news articles of COVID‐19 vaccines provoking severe and unexplained neurological syndromes. ⁴⁰ However, the end of our inclusion period was prior to vaccines being widely available for the average age of our cohort and thus unlikely a contributor. Social media use itself may be causing additional stress as its use has been tied to anxiety and depression. ⁴¹ , ⁴² Although TikTok tics are more consistent with functional tics, there has been worsening of tics in those with diagnoses of Tourette syndrome, which may represent a subsection of our cohort. ⁸ , ⁹ However, the particular phenomenological and epidemiological presentation of these movements so dramatically captured on social media emphasize the difference between them and typical chronic tics of Tourette syndrome. Another consideration for the etiology of TikTok tics is financial incentive and secondary gain, although that would be hard to prove without a close examination of those affected. Social media has become a lucrative source of income for so‐called “influencers” or popular creators through selling merchandise or through promoting other companies on their pages. Income increases for those with more subscribers can be in the millions of dollars. ⁴³ , ⁴⁴ It pays to become popular on social media platforms, and thus following trends, such as tics and Tourette syndrome, can help these creators achieve this status. In fact, 64.3% of our cohort was selling merchandise on their pages, and the same amount explicitly mentioned that viewers believed their TikTok tics to be “fake.” Ultimately, it is likely that TikTok tics represent a combination of all these possible etiologies.

There are several limitations to our study. The popularity of hashtags, videos, and content creators is incredibly fluid on social media platforms. The cohort included in this study was based on rankings during a very distinct time period from March 30 to 31, 2021. However, these content creators and videos have only continued to grow in popularity. For example, on our initial search, our most popular content creator had 12.7 million followers, and 3 weeks later had more than 13 million followers. This was a similar trend among all of the most popular content creators as well as selected hashtags. In the videos used for the quantitative assessment, the entire pelvis and legs were not visible in all videos, although all videos showed the trunk, shoulders, arms, and head. Users did appear to try and optimize the camera to show areas of the body that had the highest frequency of TikTok tics. Furthermore, if there was a high frequency of movements in the legs and pelvis that were not visible in the videos, it would add to the assumption that our cohort was different from typical patients with Tourette syndrome given the relative infrequency of tics in these body areas. ⁴⁵ Another significant limitation of our study is that it was unclear when many users actually developed their TikTok tics. Although first mention of our chosen keywords was within our inclusion period, the majority of users did not specify exactly when their movements started. However, users, regardless of age of onset, had severe tic movements in late adolescence, atypical for organic tic disorders and suggestive of a unique etiology or functional movement disorder.

We believe TikTok tics to be an example of social contagion or mass sociogenic illness, which involves behaviors, emotions, or conditions spreading spontaneously through a group or social network. Social media use has made this spread easier, faster, and wider. TikTok tics are now making their way beyond the virtual world. In a recently published case series by Hull and Parnes, a group of 6 teenage girls developed abrupt tic‐like movements after watching videos of a popular TikTok user who could very reasonably be 1 of the content creators included in our cohort. ⁴⁶ A modern clinician thus needs to remain abreast of social media sources as they have now become essential in managing patients in the current environment.

Author Roles

(1) Research Project: A. Conception, B. Organization, C. Execution; (2) Statistical Analysis: A. Design, B. Execution, C. Review and Critique; (3) Manuscript Preparation: A. Writing of the First Draft, B. Review and Critique.

C.O.: 1A, 1B, 1C, 2A, 2B, 2C, 3A, 3B

G.T.S.: 2A, 2B, 2C

C.G.G.: 1A, 1B, 2A, 2C, 3B

K.K.: 1A, 1B, 1C, 2A, 2C, 3A, 3B

Disclosures

Ethical Compliance Statement

The study did not require institutional review board approval as data were publicly available. Informed patient consent was not necessary for this work. We confirm that we have read the Journal's position on issues involved in ethical publication and affirm that this work is consistent with those guidelines.

Funding Sources and Conflicts of Interest

No specific funding was received for this work. The authors declare that there are no conflicts of interest relevant to this work.

Financial Disclosures for the Previous 12 Months

C.O. and G.T.S. have no additional disclosures to report. C.G.G. reports the following: funding to the Rush University Medical Center from the National Institutes of Health, Department of Defense, and The Michael J. Fox Foundation for research conducted by Dr. Goetz; faculty stipend from the International Parkinson and Movement Disorder Society; guest professorship honorarium provided by University of Chicago and Illinois State Neurological Society; volume editor stipend from Elsevier Publishers; and royalties from Elsevier Publishers and Wolters Kluwer Publishers. K.K. is a consultant to Neurocrine, Kyowa, Amneal, Revance, and Lundbeck and an investigator for Lundbeck, Neurocrine, Emalex, Theravance, Pharma 2B, and Sun pharma.