Hiding in Plain Sight: Functional Neurological Disorders in the News

Stoyan Popkirov, Timothy R Nicholson, Bastiaan R Bloem, Hannah R Cock, Christopher P Derry, Roderick Duncan, Barbara A Dworetzky, Mark J Edwards, Alberto J Espay, Mark Hallett, Anthony E Lang, John Paul Leach, Alexander Lehn, Aileen McGonigal, Francesca Morgante, David L Perez, Markus Reuber, Mark P Richardson, Philip Smith, Maria Stamelou, Marina A J Tijssen, Michele Tinazzi, Alan J Carson, Jon Stone, Stoyan Popkirov, Timothy R Nicholson, Bastiaan R Bloem, Hannah R Cock, Christopher P Derry, Roderick Duncan, Barbara A Dworetzky, Mark J Edwards, Alberto J Espay, Mark Hallett, Anthony E Lang, John Paul Leach, Alexander Lehn, Aileen McGonigal, Francesca Morgante, David L Perez, Markus Reuber, Mark P Richardson, Philip Smith, Maria Stamelou, Marina A J Tijssen, Michele Tinazzi, Alan J Carson, Jon Stone

Abstract

Objective: Functional movement and seizure disorders are still widely misunderstood and receive little public and academic attention. This is in stark contrast to their high prevalence and levels of associated disability. In an exploratory observational study, the authors examined whether the relative lack of media coverage of functional neurological disorders is in part due to misidentification in "human interest" news stories.

Methods: Thirteen recent news stories from high-impact English-language media outlets that portrayed patients with complex symptoms either attributed to other diagnoses or presented as medical mysteries were identified using online keyword searches. All selected news stories contained video or still images displaying relevant symptoms. Cases were categorized into movement disorders or seizure disorders and were then independently assessed by 10 respective expert raters. For each category, one story of a patient whose symptoms were due to a well-recognized neurological disease was also included. Both the diagnostic category and the respective confidence level were reported by each rater for each case. The interrater agreement was calculated for each group of disorders.

Results: The raters confirmed almost unanimously that all presented news stories except the negative control cases portrayed misidentified functional movement or seizure disorders. The interrater agreement and average diagnostic confidence were high.

Conclusions: Functional neurological disorders are often wrongly considered a rare medical curiosity of the past. However, these findings suggest that, while they are largely absent from public discourse, they often appear in the news incognito, hiding in plain sight.

Keywords: Functional Movement Disorders; Functional Neurological Disorder; Media; Psychogenic Movement Disorders; Psychogenic Nonepileptic Seizures; Stigma.

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Source: PubMed

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