Posted 26 Jul 2022
An Open Letter to Channel 4 and the ND Community
Statement of Support for our Tourette and Tics Community, from Jacqui Wallis, CEO, Genius Within CIC
Like many of my colleagues at Genius Within I was shocked to see the Channel 4 Documentary last week “Britain’s Tourette’s Mystery”. There is no evidence that Tourette’s is “contagious”, as asserted by the documentary.
This suggestion is deeply worrying, as it potentially exacerbates the isolation experienced by many in our community.
Indeed, our founder, Dr Nancy Doyle, published an urgent rebuttal of this assertion in her Forbes column last year, when the claim was first made.
The question of why more young people are experiencing involuntary tics is complex, yet the programme broadcast a fundamental misunderstanding of the difference between Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) functional neurological disorder (FND) and Tourette Syndrome (TS).
All three conditions are known to be affected by stress. All three are known to overlap with other neurominorities such as Autism, ADHD and dyspraxia.
In a situation where all adults have been exposed to potential health, personal and social trauma from the pandemic, it is no wonder that many of our young people are exhibiting signs of mental distress and stress. This is not the same as having Tourette Syndrome, but equally, it is not a sign of “making something up”. For example, having many friendship groups affected is just as likely to be a feature of neurodivergent individuals having friends with other neurodivergent individuals, where the risk factors are shared.
This is exactly what scientists and medics are trying to understand currently. It is complex. The reductive approach of taking a sensationalist position, in the aftermath of a global pandemic, that tics are contagious and therefore people with them should be avoided, is irresponsible in the extreme.
All our young people experiencing FND and TS deserve all our support; we need to rally around our community at this very difficult time. They need MORE social contact, with people that they trust, not less.
We were particularly concerned by the producers’ dereliction of duty in choosing a young, inexperienced presenter who herself had tics in childhood to lead the documentary. We note the programme played to her fears about the situation without really offering any counter to the narrative. We find this exploitative, as indeed was the inclusion of TS influencers who may have large followings but have no professional training or supervisory support to handle the backlash this ill-advised programme unleashed. We wish to offer our full support and services to any of the individuals who took part in the programme for free. We are here for you, unreservedly.
Genius Within’s Ambassador, Paul Stevenson, who lives with Tourette Syndrome, and has been deeply affected by the program, commented:
“This year, I have been collaborating a lot with Nottingham University to help TS have equal rights with other disabilities and to create NICE guidelines, as well as having meetings with members of the Government. I felt we had made so much process, and now this program has set us back so much.
In all honesty, everybody would be in an uproar if the program had been about another disability, I feel they have done real damage to the community and from personal knowledge the amount of self-doubt that I experienced was crippling, was this real, am I making it up, do I hide myself away? I feel passionately that we must hold Channel 4 to account, get this sorted and put it right.”
We hope that the Channel 4 producers engage in some self-reflection, discuss the nuances of this issue with ethical charities such as Tourette’s Action, Tourette Scotland and Tic Yorkshire, who have already spoken out about the misleading content, and issue a follow up retraction as soon as possible.
If anyone at Channel Four’s team would like to speak to me directly my contact details are: