Pandemic Tic-like Behaviors Following Social Media Consumption
Relevant conflicts of interest/financial disclosures: Nothing to report.
Full financial disclosures and author roles may be found in the online version of this article.
[Correction added on 24 September 2021, after first online publication: Projekt Deal funding statement has been added.]
Currently, there is a marked increase of young people with sudden onset of tic-like behaviors (TLBs) resembling movements and vocalizations presented on social media videos as “Tourette's syndrome.”
To delineate clinical phenomenology of TLBs after social media exposure in comparison with clinical features of Tourette's syndrome.
We compared demographic and clinical variables between 13 patients with TLBs and 13 age- and sex-related patients with Tourette's syndrome.
Patients with TLBs had several characteristics allowing to distinguish them from patients with Tourette's syndrome, some of which discriminated perfectly (ie, abrupt symptom onset, lack of spontaneous symptom fluctuations, symptom deterioration in the presence of others) and some nearly perfectly (ie, predominantly complex movements involving trunk/extremities). Also, symptom onset was significantly later.
TLBs after social media consumption differ from tics in Tourette's syndrome, strongly suggesting that these phenomena are categorically different conditions. © 2021 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society
Over the last few years, new-onset tic-like behaviors (TLBs) have created a lot of interest worldwide.1-3 Of late, we and others1-3 have noted a marked increase of children/adolescents and young adults presenting with TLBs. When specifically asked, many of these patients reported that TLBs commenced after the consumption of videos on platforms such as TikTok or Youtube showing persons allegedly having Tourette's syndrome (TS). However, many of these videos show movements and vocalizations not typically present in TS, including predominantly complex, variable, often continuous movements and elaborated and variable swearing and offensive phrases.4 Social media staging of such behaviors as TS has alerted patient organizations that have distanced themselves from these videos.5-7 This notwithstanding, these videos, which are not validated by experts from TS-specialized centers, are posted by young people from all over the world and have millions of followers and views.1, 2 It has been suggested that these videos might trigger TLBs in susceptible individuals.1-3 Global availability and increased usage of social media, particularly during the coronavirus disease 2019 pandemic, coupled with great social interest in the staging of TS, might lead to maladaptive gains further intensifying symptoms in susceptible individuals.1, 2
Patients with TLBs after the consumption of social media (TLB-SM) are often misdiagnosed with a primary tic disorder, particularly TS. However, it has been suggested that there are a number of characteristics that set the former apart from the latter.1-3 In this study, we compared the clinical profile of patients with TLB-SM with that of patients with TS.
Patients and Methods
The study was prompted by the observation that shortly after the YouTube Channel “Gewitter im Kopf” (“Thunderstorm in the head”) allegedly featuring “TS”, but in fact showing complex behavior, elaborated swearing, and offensive phrases, became more widely known, patients with TLB with similar phenomenology as shown on this YouTube channel presented to our specialized TS outpatient clinics. We enquired whether these patients had watched this particular YouTube channel or other videos allegedly featuring “TS” on platforms such as TikTok. If so, we then asked these patients with TLB whether their symptoms had started after the consumption of these social media videos. Only those patients (n = 13) who stated that this was the case were included. We did not determine the duration of exposure to social media. Patients who at the time of presentation had both TLB-SM and TS were not included in the present case series. All patients with TLB-SM (eight males, five females; mean age ± standard deviation, 16.54 ± 3.13 years; range, 12–24 years) had previously been suspected of having TS by others. Next, we selected 13 age- and sex-related patients fulfilling Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition criteria for TS8 (eight males, five females; mean age ± SD, 16.85 ± 3.76 years; range, 10–22 years) who were previously assessed at our center.
For data analysis, the following variables were included: age at onset, response to antipsychotic medication, family history of tics, and acuteness of symptom onset (gradual vs. abrupt).
Onset was defined as abrupt when the time from symptom onset to a clinical state where affected patients were impaired to such a degree that they or their relatives felt that medical advice was required was short, typically less than a day. The diagnoses of comorbid attention deficit hyperactivity disorder (ADHD), obsessive–compulsive disorder (OCD), and autism spectrum disorder (ASD) were based on clinical judgment, not on independent neuropsychiatric assessment.
The following features were specifically asked/examined: movement complexity (predominantly complex vs. predominantly simple), movement speed (mostly slow and tonic vs. mostly rapid, brief, and phasic), and distribution (mostly trunk/extremities vs. mostly face/head/neck), presence of copropraxia and echopraxia, presence of any vocalization, first vocalization (sound vs. word), complexity of vocalization (mostly complex vs. mostly simple), and presence of coprolalia and echolalia, premonitory sensations (present vs. absent), ability to suppress symptoms (yes vs. no), repertoire at the time of assessment (varied vs. limited), occurrence of TLB during neurological examination (continuous vs. reduced/stopped), social dependency of severity (increased with others vs. worse when alone), fluctuations over longer periods (ie, weeks or months; yes vs. no), presence of any goal-directed movement, and context dependence of type of movements/vocalizations (yes vs. no).
For each variable, we determined the empirical proportion (percentage of participants showing the corresponding characteristic) and the Clopper-Pearson confidence interval9 per group. Group differences were assessed using Fisher's exact test, with a significance threshold of P < 0.05 (Bonferroni-Holm corrected for multiple comparisons). Effect sizes were quantified using bias-corrected Cramer's V.10
Mean age at onset ± SD was 15.31 ± 2.96 years in patients with TLB-SM and 5.15 ± 2.79 years in patients with TS [t(24) = −9.0; P < 0.001]. Six patients with TLB-SM had been treated with antipsychotic medications, and two of them showed improvement of their symptoms after the start of medication. The empirical proportion and the Clopper-Pearson confidence interval of the other variables, as well as adjusted P values and bias-corrected Cramer's V, are shown in Fig. 1.
Age at onset was higher in patients with TLB-SM, onset was typically abrupt, and most movements were complex, slow, tonic, and predominantly involved trunk/extremities rather than face, head, and neck. These patients had a varied repertoire of movements and vocalizations. Also, symptoms were reported to deteriorate in the presence of others and improved when patients were alone. Symptoms continued during neurological examination. They lacked fluctuation over weeks and months. Movements were often goal directed (eg, directed toward other people) and were context dependent. Each of these characteristics allowed perfect or near-perfect distinguishment/classification of the two groups. Premonitory sensations, ability to suppress symptoms, presence of complex vocalizations including repetition of random words and coprolalia, and presence of comorbidities, though, did not differ between groups.
Based on clinical phenomenology and course, patients with TLB-SM can be distinguished from patients with TS diagnosed according to standard diagnostic criteria.8 Compared with TS, symptom onset was later and abrupt, with most movements being complex, predominantly involving trunk and extremities rather than face, head, and neck; often being goal directed (eg, directed toward other people), context dependent, and continuing during neurological examination; and the repertoire of movements and vocalizations being variable. Importantly, whereas tics in TS characteristically attenuate when patients meet others and tend to deteriorate when patients are alone or in a comfortable environment,11 TLB-SM showed the opposite pattern: symptoms did not fluctuate over weeks and months, which is an essential feature in TS.4 In contrast, the presence of complex vocalizations, including coprolalia, albeit common in patients with functional tic-like movements,1, 12 did not significantly differ between groups. However, because we restricted our analysis to the presence or absence of coprolalia, group differences with respect to coprolalia characteristics were not captured. Our findings also indicate that it is not possible to distinguish between these patients and patients with TS based on the presence of premonitory sensations, ability to suppress symptoms, presence of comorbidities (ADHD, OCD, ASD), and family history of tics. However, because the diagnoses of ADHD, OCD, and ASD were based on clinical judgment, but not on independent neuropsychiatric assessment, and because the presence or absence, but not characteristics and severity, of premonitory urges was noted, subtle group differences might have been missed. Also, we did not formally assess and rate anxiety or depression in the patients reported here. The neuropsychiatric profile of patients with TLB-SM should be examined in more detail in future studies.
Patients with TLB-SM shared features with patients with functional tic-like movements as described previously,4, 13, 14 including sudden onset in (late) adolescence/early adulthood rather than childhood and complexity and distribution of movements, that is, a lack of the characteristic rostrocaudal gradient typical for tics in patients with TS15 and lack of the characteristic waxing and waning of symptoms in TS.16 Notably, functional tic-like movements can co-occur in patients with TS. Because this study aimed at delineating differences between TLB-SM and TS, we included only those patients who at the time of presentation solely had TLB.
Interestingly, several of the previously reported characteristics of patients with functional tic-like movements were present only inconsistently in our patients and did not allow to distinguish between the groups, including the absence of premonitory sensations, inability to suppress symptoms, lack of family history of tics, and lack of clinical improvements when patients were treated with antidopaminergic medication.4, 13, 14 Somewhat surprisingly, as pointed out, phenomenology of vocalizations did not significantly differ between groups. This has to be viewed against the background that clinical presentation in patients with functional tic-like movements and vocalizations has previously been characterized as being dominated by complex vocalizations.4, 12 Thus, although vocalizations are part of the definition of TS8 and are perceived as the single most characteristic sign of TS in the public,7, 17 their presence and characteristics apparently do not allow distinguishing between TLB-SM and TS.
However, there were some conspicuous and highly distinguishing features in patients with TLB-SM as yet not consistently associated with functional tic-like movements, such as varied repertoire at a given time, symptom continuation during neurological examination, goal direction of extra movements, and symptom deterioration when patients meet others. It is possible that some or all of these features were also present, but not recognized, in previous series of patients with functional tic-like movements, so that at present it is unclear whether TLB-SM and functional tic-like movements are different entities. A special feature of TLB-SM, though, might be that it is a socially driven phenomenon.1-3 Given the occurrence of similar cases in many countries and the increasing number of adolescents and young adults staging symptoms resembling TS on platforms such as TikTok or Youtube,1-3 this phenomenon might be referred to as “pandemic TLB”.
In conclusion, based on clinical phenomenology and course, TLB-SM can reliably be distinguished from TS and probably represents a socially driven functional movement disorder.
This work was supported by the Deutsche Forschungsgemeinschaft (DFG, FOR 2698). Open Access funding enabled and organized by Projekt DEAL.
(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.
T.P.: 1B, 1C, 2B, 2C, 3A, 3B
T.B.: 1B, 2A, 2B, 2C, 3B
J.V.: 2A, 2B, 2C, 3B
A.W.: 2C, 3C
V.R.: 2C, 3C
C.B.: 1A, 1B, 2C, 3C
A.M.: 1A, 1B, 2A, 2C, 3A, 3B
Theresa Paulus—stock ownership in medically related fields: none; consultancies: none; advisory boards: none; partnerships: none; honoraria: none; grants: none; intellectual property rights: none; expert testimony: none; employment: University Medical Center Schleswig-Holstein, Campus Lübeck; contracts: none; royalties: none; other: none.
Tobias Bäumer—stock ownership in medically-related fields: none; consultancies: none; advisory boards: Ipsen Pharma, Allergan, Merz Pharmaceuticals; partnerships: none; honoraria: Ipsen Pharma, Allergan, Merz Pharmaceuticals; grants: Research Group, DFG FOR 2698; intellectual property rights: none; expert testimony: none; employment: University Medical Center Schleswig-Holstein, Campus Lübeck; contracts: none; royalties: none; other: none.
Julius Verrel—stock ownership in medically related fields: none; consultancies: none; advisory boards: none; partnerships: none; honoraria: none; grants: none; intellectual property rights: none; expert testimony: none; employment: University of Lübeck; University Medical Center Schleswig-Holstein, Campus Lübeck; contracts: none; royalties: none; other: none.
Anne Weissbach—stock ownership in medically related fields: none; consultancies: none; advisory boards: none; partnerships: none; honoraria: none; grants: Else Kröner-Fresenius grant (EKFS, 2018_A55), German Research Foundation (DFG, WE5919/2–1), and Edmond J. Safra Fellowship in Movement Disorders from The Michael J. Fox Foundation; intellectual property rights: none; expert testimony: none; employment: University Medical Center Schleswig-Holstein, Campus Lübeck; contracts: none; royalties: none; other: none.
Veit Roessner—stock ownership in medically related fields: none; consultancies: none; advisory boards: none; partnerships: none; honoraria: lecture for INFECTOPHARM Arzneimittel und Consilium GmbH; article for Deutsches Ärzteblatt; grants: Joint Federal Committee/German Aerospace Center; Else Kroener-Fresenius-Stiftung; German Research Foundation; intellectual property rights: none; expert testimony: none; employment: TU Dresden, Faculty of Medicine Carl Gustav Carus; contracts: none; royalties: none; other: none.
Christian Beste—stock ownership in medically related fields: none; consultancies: none; advisory boards: none; partnerships: none; honoraria: none; grants: support from foundations: Friede Springer Stiftung, Else Kröner Fresenius Stiftung, CHDI; academic research support: Deutsche Forschungsgemeinschaft (DFG) SFB 940, SFB TRR 265, and FOR 2698; intellectual property rights: none; expert testimony: none; employment: TU Dresden, Germany; contracts: none; royalties: none; other: none.
Alexander Münchau—stock ownership in medically related fields: none; consultancies: Desitin, Merz Pharmaceuticals, Admedicum, and PTC Therapeutics; advisory boards: German Tourette syndrome Association; Alliance of patients with chronic rare diseases; partnerships: none; honoraria: Pharm Allergan, Ipsen, Merz Pharmaceuticals, Actelion, GlaxoSmithKline, Desitin, Teva, and Takeda; grants: support from foundations: Possehl-Stiftung (Lübeck, Germany), Margot und Jürgen Wessel Stiftung (Lübeck, Germany), Tourette Syndrome Association (Germany), Interessenverband Tourette Syndrom (Germany), CHDI, and Damp-Stiftung (Kiel, Germany); academic research support: Deutsche Forschungsgemeinschaft (DFG) projects 1692/3–1, 4–1, SFB 936, and FOR 2698 (project numbers 396,914,663, 396,577,296, and 396,474,989); European Reference Network–Rare Neurological Diseases (ERN-RND; Project ID No. 739510); intellectual property rights: none; expert testimony: none; employment: University of Lübeck; University Medical Center Schleswig-Holstein, Campus Lübeck; contracts: none; royalties: royalties for the book Neurogenetics (Oxford University Press); other: commercial research support: Pharm Allergan, Ipsen, Merz Pharmaceuticals, and Actelion.
Data Availability Statement
Data available on request from the authors.
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