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Submission to the Parliamentary Group into ME/CFS

Submission to the Parliamentary Group into ME/CFS. Professor Trudie Chalder, King’s College London. Aims. To describe a model of understanding CFS To review the evidence for CBT To suggest future research ideas. Introduction. CFS/ME is a heterogeneous disorder

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Submission to the Parliamentary Group into ME/CFS

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  1. Submission to the Parliamentary Group into ME/CFS Professor Trudie Chalder, King’s College London

  2. Aims • To describe a model of understanding CFS • To review the evidence for CBT • To suggest future research ideas

  3. Introduction • CFS/ME is a heterogeneous disorder • And what starts it may not be what perpetuates it • ….or causes disability

  4. Definition of Cognitive Behavioural Therapy (CBT) • CBT is an active, collaborative, structured, time limited, common sense, individualised problem solving approach for a range of conditions • It is based on theory • It addresses the way thoughts and behaviours affect physiological and emotional processes and vice versa

  5. Cognitive Behavioural Model • Physiological and emotional responses (symptoms) • Cognitive response (thoughts/beliefs and images) • Behavioural response • Environmental factors

  6. We already know that CBT works for: • Chronic Pain • Chronic Diseases i.e rheumatoid arthritis • Cancer (fatigue, distress) • Irritable Bowel Syndrome • Anxiety disorders • Depression • Eating disorders • PTSD to name but a few

  7. Myths • CBT is only used for anxiety or depression • If you get better with CBT your problem was “all in the mind” • CBT only works if a person is depressed or anxious (In CFS its more the opposite!)

  8. Pilot study (Butler et al 1991) • 32 patients referred to the NHNN (Queen Square) accepted the offer of treatment • 6 had severe disability being confined to wheelchair or bed most or all of the time • We adapted treatment used in chronic pain and our aim was to improve fatigue and functioning • About ¾ improved significantly

  9. CBT for CFS (RCT’s) • 3 high quality studies carried out by independent research groups (King’s, Oxford & Nijmegen) showed that individual CBT improved fatigue & physical functioning (Sharpe et al BMJ 1996; Deale et al Am J Psych 1997: Prins et al Lancet 2001)

  10. Long term outcome of CBT v relaxation for CFS: a 5 year follow up (Deale et al 2001) • Setting: Medical out patient clinic • Design: Longitudinal follow up • Patients: 53/60 patients who took part in RCT • Results: 24% who received CBT were completely recovered; 71% of those who received any CBT rated themselves as much better; 18% of those receiving relaxation were much better. • Conclusions: CBT produces long term benefits but some waning of effects at 5 years. Booster sessions would help maintain gains

  11. Does it work in “real life”? (Chalder et al) • Setting: General Hospital fatigue clinic • Treatment: Routine practice • Patients: 293 patients with CFS • Results: 58% rated themselves as very/much or much better; 26% were a little better; 16% were the same or worse on global outcome, fatigue and social adjustment • Conclusions: It works in real life settings, not just clinical trials

  12. Prevention of Chronic Fatigue in Glandular Fever Candy et al 2005

  13. CBT for CFS in adolescents • 2 RCT’s carried out independently in Holland and London • Both demonstrate improvements in fatigue and increase likelihood of returning to school

  14. Psycho-educational intervention for Cancer related fatigue Three one hour sessions over 9-12 weeks • Session 1: Assessment • Session 2: Activity planning Sleep management • Session 3: Increasing activity Dealing with negative thoughts

  15. Cancer related fatigue (RCT) Linear regression at T3 (Corrected for T1) B = -15.9, 95% CI = -30.2, -1.7, P = 0.030

  16. Conclusions • CBT is an effective rehabilitation strategy for CFS/ME • It is cost effective • It requires skilled therapists – much of what passes as “CBT” isn’t • It does not mean that CFS/ME is all in the mind

  17. Future Research • Now need to focus on the severely affected • Need to develop and evaluate interventions for fatigue in work settings to reduce likelihood of fatigue developing into chronic disorder • Need to carry out large trial of CBT for adolescents to examine effects outside of specialist centres • Why does CBT work? What biological changes occur as a result of CBT – eg neuroendocrine, fMRI, PET

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