Reporting Behaviour Change - Exploring the Role of Language in Influencing Clinical Outcomes: Theoretical and Conversation Analysis of Chronic Fatigue Syndrome (CFS/ME) Interventions

Background: NHS specialist medical care (SMC) for adolescent Chronic Fatigue Syndrome (CFS/ME) includes behavioral and cognitive-behavioral therapies and is suboptimal, with a third of patients not recovering within 6 months. Many families seek alternative interventions, with the Lightning Process (LP) being the most popular. The SMILE Trial showed LP, when delivered in addition to SMC, improved clinical outcomes in adolescents (compared with SMC alone). Not enough is known about the LP and how it may help. This study sought to identify and analyze potential mechanisms of action of LP compared to SMC for adolescent CFS/ME. The objectives were to (i) Identify distinct components of SMC and LP interventions for adolescent CFS/ME and (ii) Explore the use of language to facilitate clinical outcomes. Design: Theoretical comparison, including stakeholder focus group to identify distinct components of interventions. Conversation analysis applied to practitioner-patient interactions. Methods: Theoretical intervention components aligning with the (TIDieR) Template for Intervention Description and Replication were identified from SMC and LP literature, shadowing SMC clinics, and an LP course. Stakeholder consultation, including focus group with pediatric SMC clinicians, LP practitioners, and independent researchers, refined the theoretical differentiation of interventions. The results of the theoretical review informed the focus of the conversation analysis. Practitioner-patient interactions from recordings of LP group courses delivered (by two different LP practitioners) to young people with CFS/ME within the SMILE Trial were subject to conversation analysis focusing on participants’ reporting of their behavioral achievements. Participating adolescents were aged between 12-18 years, had a diagnosis of CFS/ME, consented to take part in the SMILE trial (comparing SMC to SMC+LP) when they were referred to a specialist pediatric CFS/ME treatment center in an NHS hospital in the South West of England, were randomized to SMC+LP treatment and attended group LP sessions. Results: While SMC and LP approaches share features (including behavioral goal setting and progress-checking), a key difference is LPs’ focus on language use for promoting recovery, which is absent from SMC. LP practitioners explicitly coached participants to talk in positive, active terms (with matching tone and body language) and taught a linguistic concept (“dû”) theorized to enhance their agency, which was particularly evident during progress-checking when participants were encouraged to report their behavioral achievements since starting the course. Conversation analysis identified techniques LP practitioners used to coach patients to report behavioral achievements positively, including optimistic questioning, (other-initiated) correction and reformulating to upgrade positive emotions. Conclusions: Coaching CFS/ME patients in how to report behavioral achievements positively may be a mechanism for enhancing recovery. This hypothesis needs testing in further research.

Keywords – Adolescent, Behavior change, Chronic fatigue syndrome, Clinical communication, Conversation analysis, Interventions