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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 l.jpg

Submission to the Parliamentary Group into ME/CFS

Professor Trudie Chalder,

King’s College London


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Aims

  • To describe a model of understanding CFS

  • To review the evidence for CBT

  • To suggest future research ideas


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Introduction

  • CFS/ME is a heterogeneous disorder

  • And what starts it may not be what perpetuates it

  • ….or causes disability


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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


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Cognitive Behavioural Model

  • Physiological and emotional responses (symptoms)

  • Cognitive response (thoughts/beliefs and images)

  • Behavioural response

  • Environmental factors


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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


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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!)


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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


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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)


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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


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Does it work in “real life”? follow up (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



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CBT for CFS in adolescents follow up

  • 2 RCT’s carried out independently in Holland and London

  • Both demonstrate improvements in fatigue and increase likelihood of returning to school


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Psycho-educational intervention for Cancer related fatigue follow up

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


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Cancer related fatigue (RCT) follow up

Linear regression at T3 (Corrected for T1)

B = -15.9, 95% CI = -30.2, -1.7, P = 0.030


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Conclusions follow up

  • 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


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Future Research follow up

  • 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