1. Cognitive behavioural therapy (CBT) and exercise for neuromuscular conditions Mark Hamilton Research Fellow in Clinical Genetics University of Glasgow / Queen Elizabeth University Hospital Overcoming Fatigue

2. Overview Defining fatigue Theory of CBT Exercise therapy and CBT Evidence for use in muscle disease

3. Fatigue “Extreme tiredness resulting from mental or physical exertion or illness” Duchenne 41% 1 FSHD 61% 2 Myotonic dystrophy 90% 3 1 Pangalila et al.2015; 2 Voet et al. 2014; 3 Heatwole et al. 2012

4. Fatigue Acute vs. chronic Central vs. peripheral General population Duchenne MD

5. Chronic Fatigue

6. Fatigue, pain and anxiety/depression in DMD Pangalila et al.2015

7. Cognitive Behavioural Therapy “talking” therapy Structured sessions – Typically short-term over several sessions – Examining aspects of thinking and behaviour – Identify areas of change – Goal-setting

9. Muscle ache, Fatigue, Sleepiness “No point in going” “I won’t enjoy it” “I won’t be able to do it” “It’ll just make me feel worse” Isolated, Low in mood, Hopeless Don’t get out of bed Cancel plans Avoid exertion

10. Thought Challenging “Negative automatic thoughts” 1.Catch the thought 2.Look for evidence 3.Find an alternative, evidence-based thought

11. Thought Challenging

12. Activity Planning List activities – Routine – Necessary – Pleasurable Specific exercise or activity programme Accountability

13. Activity Planning

14. Goals in CBT for muscle disease likely involve increased exercise Goal-setting in CBT is likely to include increased activity levels Goal-setting and “coaching” relationship also an important component of physiotherapy

15. So does it work? Well recognised benefits in – Depression, anxiety, OCD But also: – chronic fatigue syndrome (40% vs. 26%) 1 – multiple sclerosis (sustained effect) 2 – post-chemotherapy (54% vs. 4%) 3 1 Price 2008; 2 Van Kessel 2008; 3 Gielissen 2006

16. Aerobic exercise and CBT in Facioscapulohumeral MD 77 individuals with severe fatigue – 1. Aerobic exercise – 2. CBT – 3. Usual care Followed up for 6 months

17. Results Fatigue scores – AET: ~24% – CBT: ~30% 76% of CBT group and 50% of AET group no longer severely fatigued Improvements in – sleep disturbance – physical activity – Social participation Sustained (more than 70% kept up new habits)

18. Myotonic dystrophy type 1 Commonest form of muscular dystrophy among adults Multi-system disorder Central effects heighten fatigue, apathy and low mood symptoms

19. The OPTIMISTIC Trial “We hypothesise that a DM1-specific CBT intervention, aimed at the fatigue- maintaining beliefs and behaviours will lead to a significant reduction of fatigue and improved quality of life” 250 patients people with myotonic dystrophy type 1 – Newcastle, Munich, Paris, Nijmegen 10 to 14 sessions over 10 months (some can be Skype), focusing on: – Improving sleep patterns – Starting new activities – Increasing physical activity – Thinking about ways to change how symptoms affect you – Improving relationships with others Followed up for 6 months after that

20. Progress … Recruitment now closed Final follow-up due March Results expected later in 2016 Anecdotally, patients have enjoyed taking part

21. What do I tell patients now? If mood problems are predominant – Talk to your GP about referral for CBT Otherwise – Talk to patients about relationship between activity levels, mood and physical symptoms – Goal-setting with encouragement – Encourage use of patient’s own support networks to achieve goals and maintain new behaviours

22. Summary Physical symptoms, mood, motivation and social participation are inter-dependent CBT may become more increasingly mainstream in management of muscle disease Meantime – Help patients reflect on habits and ways of thinking – Challenge unhelpful ones – Goal-setting and “coaching” are key – If mood is a major concern, encourage discussion with GP about CBT

23. Questions?