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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

Submission to the Parliamentary Group into ME/CFS

Professor Trudie Chalder,

King’s College London

slide2
Aims
  • To describe a model of understanding CFS
  • To review the evidence for CBT
  • To suggest future research ideas
introduction
Introduction
  • CFS/ME is a heterogeneous disorder
  • And what starts it may not be what perpetuates it
  • ….or causes disability
definition of cognitive behavioural therapy cbt
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
cognitive behavioural model
Cognitive Behavioural Model
  • Physiological and emotional responses (symptoms)
  • Cognitive response (thoughts/beliefs and images)
  • Behavioural response
  • Environmental factors
we already know that cbt works for
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

myths
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!)
pilot study butler et al 1991
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
cbt for cfs rct s
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)

long term outcome of cbt v relaxation for cfs a 5 year follow up deale et al 2001
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
does it work in real life chalder et al
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
cbt for cfs in adolescents
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
psycho educational intervention for cancer related fatigue
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

cancer related fatigue rct
Cancer related fatigue (RCT)

Linear regression at T3 (Corrected for T1)

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

conclusions
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
future research
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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