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Tourettes Action held their Tourettes Action research Network meeting on Friday 13th September 2019 in London.
Posted on 26 September 2019
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Suzanne Dobson the Chief Executive of Tourettes Action got the event underway with welcome and introductions. We heard from the Tourettes Action research award recipients from the last research award round. They reported findings and gave an overview of their research. Some of the slides and information will not be made available to a wider audience due to patient confidentiality as well as some of the results still awaiting publication. Once these results are published they will be disseminated as usual by Tourettes Action.
Professor Georgina Jackson & Professor Stephen Jackson. Evaluating the efficacy and tolerability of peripheral nerve stimulation as a potential therapy for Tourette syndrome.
Last year Tourettes Action funded a project about the efficacy and tolerability of peripheral nerve stimulation as a potential therapy for Tourette Syndrome. Professor Georgina Jackson and Professor Stephen Jackson from the University of Nottingham gave an overview. Their research proposed to investigate whether safe and effective methods of peripheral somatosensory stimulation – specifically, transcutaneous electrical nerve stimulation (TENS) - can be used to effectively reduce tics in TS. TENS involves delivering mild electrical signals to a targeted peripheral nerve and is frequently used to provide pain relief. It is used widely within the NHS (e.g. to provide pain relief during childbirth or for chronic pain conditions), is non-invasive, and has no serious side effects. TENS machines can even be purchased 'over the counter' in many countries, including the UK. They investigated (a) whether TENS - delivered to the wrist - can alter cortical motor activity and thereby contribute to the suppression of tics, and (b) whether such stimulation is well-tolerated by young adults with TS.
Annet Heijerman & Dr Cara Verdellen. Tackle your Tics: feasibility of a brief, intensive group-based exposure therapy programme for children with Tourette Syndrome.
In the last research awards round TA funded a research project, which looked at the feasibility of a brief, intensive group-based exposure therapy programme for children with Tourette Syndrome. This research was conducted in the Netherlands by Annet Heijerman from the Dutch Knowledge Centre for Child and Adolescent Psychiatry and Dr Cara Verdellen a clinical psychologist from PsyQ/TicXperts in conjunction with the Dutch Tourette Association. Behavioural treatment is considered a first-line intervention for tic disorders. However, patients still reach an average tic reduction of only 30 % and many patients do not have access to adequate behavioural treatment at all. Behavioural treatment for tics is only available to a very limited extent. Due to a lack of trained specialists, families often have to travel long distances for weekly therapy sessions. The therapy and daily exercises at home are experienced by children as tough and can cause fatigue and concentration problems in school. Patient associations advocate that families urgently need treatments that are easier to undergo and which also support children to cope with their Tourette. The purpose of this pilot study was to overcome the barriers described, make therapy more accessible and improve tic reduction, quality of life and treatment satisfaction. In a marathon-period of three days, small groups of children with TS will follow a brief intensive programme consisting of ERP treatment, psycho-education, relaxation activities, group support, a training app and parent meetings.
Dr Melina Malli. The Stigma of Tourette Syndrome
The final presentation from researchers who received a TA research award in the last round was Dr Melina Malli from the Tizard Centre at the University of Kent concerning the Stigma of Tourette Syndrome. The objective of this study was to show how prevalent stigma is amongst people with TS. By allowing people with TS to tell their own stories about how stigma affects their quality of life we can gain knowledge about how stigma is felt and experienced. This research also hoped to give an overview of how good current care and support systems are for people with TS and ways in which services could be improved. The preliminary research findings are that people with TS reportunequal access to educational, work and health settings, experience unofficial exclusion in educational settings and inflexible attitudes within workplaces. There were some reports of health care professionals who lacked understanding about the condition and difficulties receiving adequate healthcare reported. The process of getting diagnosed was extremely complex, confusing and time consuming. Melina suggested that work is needed to increase acceptance of people with Tourettes Syndrome in the wider community and normalise the identity of people with TS. Perhaps via anti-stigma campaigns & mass-media campaigns which could be tailored to tackle institutionalised discrimination fronted by celebrities and public figures- role models.
Professor Mark Edwards. Functional tics and treatment
Just before lunch we had a fascinating presentation from Professor Mark Edwards who spoke about functional tics, Tourette Syndrome tics and treatment. Professor Edwards Functional explained what functional movements are and suggested that there can be an overlay of functional tic-like and other functional movement disorders in people with TS. He showed several patient videos to the audience to demonstrate what this might look like.
Professor Eileen Joyce. Attentional and inhibitory mechanisms in Tourette’s syndrome
Professor Joyce spoke about current psychological therapies, which aim to extinguish tics by loosening the association between a tic and an urge. She discussed Exposure and response prevention (ERP) which involves active suppression of tics during an urge – on the basis that tics are conditioned responses to urge. Then she described Habit reversal therapy (HRT) which encourages a competing voluntary movement to a specific tic when an urge is experienced - on the basis that tics are faulty habits. Professor Joyce argued that both therapies require focussed attention on urges and tics and that using attention distraction techniques could reduce tic expression. She suggested that the effort of active suppression appears to harness attentional resources that improves cognitive performance. She suggested that perhaps attention distraction could be used with ERP and HRT as a therapy.
Dr Tammy Hedderley. Co-mobiditieslabels, lists and let's talk
Dr Tammy Hedderly spoke about a clinical viewpoint of Tourette Syndrome and comorbidities. We are unable to share her videos or slides from her talk but some of the points she covered are included below, with links to research papers. Dr Hedderly spoke about a condition called Misophonia - the dislike or hatred of specific sounds that results in an extreme emotional response. The article below reports on misophonic experiences and associated clinical characteristics in young people with tic disorders.
Misophonia in Children with Tic Disorders: A Case Series
Dr Hedderly spoke about people managing their tics very well but that the children and families she saw in her clinic often were in great distress, especially when there is a lack of understanding about their nature and the related conditions. The paper below is a clinical guide to assessment, diagnosis and management recommended by Dr Hedderly.
Childhood tic disorders: diagnosis and management
Dr Hedderly also discussed that atypical interoceptive accuracy could contribute to the co-occurrence of anxiety and premonitory urge in chronic tic disorders (CTD) but that it could hold the potential as a transdiagnostic treatment target for tics and anxiety, which would benefit patients and improve their quality of life.
Dr Charlotte Rae. Body perception in Tourette Syndrome - interoception, tics & premonitory urges
Dr Rae explained that interoception is the ‘sensing of internal bodily signals, producing emotions and feelings’. Dr Rae suggested that tics occur because of the physical sensations that generate urges to move which are reported by 95% of adults with TS. Dr Rae spoke about the difference between interoceptive accuracy and interoceptive sensitivity. The research findings suggest that interoceptive accuracy (of sensations like how hard my heart is beating, my nose itching, muscle tension etc.) is moderately reduced in TS but adults with TS self-report as more sensitive to bodily sensations. She suggests this could mean more sensitivity to less accurate body signals. Higher body sensitivity has been associated with worse tics, worse impairment, and worse premonitory sensations. Dr Rae suggests that some kind of training in interoception might be helpful for people with TS and there has been some links between interoception and anxiety and a possible interaction with tic attacks.
Professor John Rothwell. The neurophysiology of tics.
Professor Rothwell presented on the neurophysiology of tics and suggested that from his research that the ability to control tics is not necessarily related to the severity of tics, especially in adults.
Slides from the 2019 TARN conference are available as PDF downloads in our Resources section.
This meeting was a great opportunity to hear the outcomes and impact from Tourettes Action funded research. We would like to thank all the speakers and all the audience members for their insightful questions.
We look forward to seeing you at the next TARN meeting in 2020!
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