A call for caution: 'stop that' sentiments threaten tic research, healthcare and advocacy

Abstract

Recent reports from Tourette syndrome clinical researchers in North America and Europe1,2 describe a recent increase in young patients presenting to Tourette syndrome clinics. Reported commonalities in clinical presentation include a female preponderance, older age of first detected symptoms, complex behaviours (e.g. phrases, coprolalia, long/sequenced movements), significant functional impairment, and similarities to behaviours recorded in videos on social media platforms, notably TikTok. This has raised important questions about aetiology and how to best diagnose and treat these individuals. In their recent Brain paper, Müller-Vahl et al.3 postulated that this phenomenon is a ‘mass sociogenic illness.’ The function of this assertion could be to caution clinicians and patients against using interventions contraindicated for those with functional movement disorder (FMD). However, this postulate does not follow neatly from the current state of the evidence, and the rhetorical language used risks negatively impacting patients by implying that these symptoms are ‘attention seeking’ behaviours. In this response, written by a group of Tourette syndrome researchers, clinicians, and individuals with tics, we detail concerns with the paper.