I first heard about this cluster of cases at the start of this year, following a flurry of media attention. What felt clear from the very beginning was that this wasn’t, as some people speculated, a hoax.
The Internet’s full of people pretending to have Tourettes – and I’ve always found it easy to distinguish these lazy, foolish, thoughtless joke videos from those showing people with genuine tics. The videos of the girls from Le Roy clearly showed young women with frequent and debilitating tics the like of which I couldn’t imagine being sustained voluntarily. The title of the programme’s misleading because no-one seemed to be suggesting these young people had Tourettes. But their symptoms did resemble it.
What struck me most about was not how familiar the appearance of these girls’ tics was, but how familiar their descriptions of the sensations of them were. I was particularly interested in the way a young woman called Lori described a strong feeling associated with her tics as emanating from her spine. This is how I’ve often described the sensation of my own tics. It isn’t something that’s usually detailed in the literature about Tourettes, or something that people without genuine tics tend to think about. Lori’s tics and her description of them rang true to my own experience and I found this fascinating.
The programme described the chronology of what happened in Le Roy and the various explanations given for these young people’s symptoms. I found the initial diagnosis of mass psychogenic illness (‘mass hysteria’) unconvincing, but I did find a diagnosis of conversion disorder appropriate for the older woman featured on the programme.
For the others, the idea that the tics were caused by an infection seemed to make more sense. Tourettes, and other movement disorders, have well-established associations with infections, particularly streptococcus, a bacterium that causes sore throats. In fact only yesterday I wrote about the tests my specialist had carried out to ascertain whether infection was a factor in my tics. For me it wasn’t, but some of the young people in Le Roy reportedly recovered following treatment with antibiotics.
I can understand why some people would be concerned about the effect of this programme on the public’s understanding of Tourettes Syndrome – Tourettes isn’t a contagious condition, and the title of the programme wasn’t helpful in that regard either – but I did find the experiences of these families very interesting.
When I first heard about this cluster of people I hoped it might act as a catalyst for improved research and understanding of tics and Tourettes. Sadly, this doesn’t seem to have been the case.
Tonight’s programme offered little in the way of concrete conclusions but it did show what a complex and mystifying organ the brain is. Whatever the underlying reason for these young people’s symptoms, the challenges faced by those still ticcing will be similar to my own. I hope they’re shown understanding and are helped to find ways to reduce the impact of their tics on their lives.