1. Cognitive Behavioural Therapy in Chronic Fatigue Syndrome/ME Alice E. Green Highly Specialist Counselling Psychologist Oldchurch Hospital CFS Team

2. Alice Green, Oldchurch Hosiptal, Essex Centre for Neurosciences 2 Overview What is CFS/ME? CBT Overview Psychological Models of CFS/ME Psychological Factors in CFS/ME Evidence-based Practice Using CBT in Treatment of CFS/ME Conclusions

3. Alice Green, Oldchurch Hosiptal, Essex Centre for Neurosciences 3 Diagnosis of CFS/ME Ongoing disabling fatigue > 6m Defined onset of symptoms Impairment of short-term memory concentration Sore throat/Tender cervical or axillary lymph nodes Muscle pain/ Multijoint pain/Headaches Unrefreshing sleep Post-exertion malaise lasting more than 24 hours

4. Alice Green, Oldchurch Hosiptal, Essex Centre for Neurosciences 4 Exclusion Criteria Any active medical condition that could explain the chronic fatigue Past / current major depressive disorder with psychotic or melancholic features; bipolar affective disorders, schizophrenia; delusional disorders, dementias, anorexia nervosa, bulimia nervosa Alcohol or other substance abuse within 2 years prior to the onset

5. Alice Green, Oldchurch Hosiptal, Essex Centre for Neurosciences 5 CBT Models of CFS/ME Illness beliefs and coping strategies are key factors in the onset & perpetuation of CFS/ME Cognitions, Behaviours, Emotional reactions and Physiological factors interact to maintain CFS/ME symptoms

6. Alice Green, Oldchurch Hosiptal, Essex Centre for Neurosciences 6 Cognitive Behavioural Therapy

7. Alice Green, Oldchurch Hosiptal, Essex Centre for Neurosciences 7 Process of CBT Therapy Therapeutic Alliance & Trust Awareness of Domains of experience Underlying Core Beliefs (Schemas) Understanding Links between Domains Instilling the Possibility of Change Challenging Beliefs & Experimentation Reviewing Changes made in therapy

8. Alice Green, Oldchurch Hosiptal, Essex Centre for Neurosciences 8 Wessely, Butler, Chalder & David (1991) Organic Insult e.g. virus Physical Symptoms Rest to relieve symptoms Physical Deconditioning Increased Pain / Fatigue

9. Alice Green, Oldchurch Hosiptal, Essex Centre for Neurosciences 9 Cycle of Avoidance Pain symptoms are misinterpreted by patient as due to a physical disease / illness. Rest is used to cope and perpetuates the CFS/ME Cycle of Symptoms, Avoidance and Deconditioning Demoralisation; Depression; Anxiety etc Exacerbates CFS/ME symptoms

10. Alice Green, Oldchurch Hosiptal, Essex Centre for Neurosciences 10 Additional Factors Precipitants: Virus / Excessive stress Predisposition: Personality traits / Biology Perpetuators:“Boom & Bust”, personality traits, beliefs CFS/ME patients tend to be high-achievers, basing their self-esteem on high standards and expectations of others (Suraway, Hackmann, Hawton & Sharpe, 1995)

11. Alice Green, Oldchurch Hosiptal, Essex Centre for Neurosciences 11 Interpretation of Symptoms: Attributional Styles Somatic attributions e.g. virus Psychological attribution e.g. stress Normalising attribution e.g. Symptoms due to change in lifestyle, behaviour, environment etc.

12. Alice Green, Oldchurch Hosiptal, Essex Centre for Neurosciences 12 Somatic Attributions and CFS/ME -CFS/ME patients tend to attribute symptoms using a somatic attributional style. Butler, Chalder & Wessely (2001) -Patients who somatise will be less active in the face of pain and fatigue symptoms, maintaining the illness, leading to CFS/ME (Vercoulen et al., 1998) - People are of greater risk of developing CFS/ME post-virally if they use a somatic attributional style (Cope et al., 1994)

13. Alice Green, Oldchurch Hosiptal, Essex Centre for Neurosciences 13 How are Symptoms Experienced? CFS/ME patients are more Hypervigilant to symptoms (Vercoulen et al., 1998) CFS/ME patients subjectively experience more sleep disturbance than non-CFS/ME controls, even when there is no objective difference in the sleep recordings (Twin study – Watson et al, 2003). CFS/ME patients underestimate their activity levels and overestimate their symptoms (Fry & Martin, 1996)

14. Alice Green, Oldchurch Hosiptal, Essex Centre for Neurosciences 14 Possible Underlying Reasons…. Could be due to patients’ very high expectations of themselves? CFS/ME patients set themselves very high standards to uphold, therefore, may underestimate own activity and overestimate symptom levels Attribution of CFS/ME to external factors may help protect patients from feelings of depression and sense of failure?

15. Alice Green, Oldchurch Hosiptal, Essex Centre for Neurosciences 15 Illness Beliefs in CFS/ME Studies using the Illness Perception Questionnaire (Weinmann, Petrie, Moss-Morris & Horne, 1996) -patients attribute symptom control to biological factors and not so much to their own behaviour (compared to other long-term conditions e.g. R.A., chronic back pain) -Symptoms will have a profound impact upon their life, will last a long time and will be wide-ranging in nature

16. Alice Green, Oldchurch Hosiptal, Essex Centre for Neurosciences 16 Illness Beliefs cont…. Spence & Moss-Morris (in press) – Prospective study Patients with glandular fever who have: 1.Lack of understanding of their illness 2.Highly distressed due to illness 3.Low perceived control over their illness are more likely to go on to develop CFS/ME

17. Alice Green, Oldchurch Hosiptal, Essex Centre for Neurosciences 17 Cognition leads to Coping styles Sense of Internal Controlvs External Control of symptoms Cope more positively Will seek out social support Maladaptive coping Disengagement Avoidance Vent emotions Moss-Morris et al (1996)

18. Alice Green, Oldchurch Hosiptal, Essex Centre for Neurosciences 18 Coping styles… Reduction in Activity Fear that activity will make their condition worse (Ray et al., 1995) Catastrophising thinking styles - these increase CFS/ME symptoms (Petrie et al, 1995) ++Negative beliefs lead to withdrawal, giving up, helplessness (Less) negative beliefs lead to “boom and bust” – such action is determined by subjective symptom experience

19. Alice Green, Oldchurch Hosiptal, Essex Centre for Neurosciences 19 Cognitive Behavioural Therapy Strategies Cognitive Restructuring exercises -These can be used to reduce patients’ fear of activity -Can reduce symptoms of CFS/ME compared to control group (Deale, Chalder & Wessely, 1998) Increasing Patients’ Awareness: *Interplay between person’s beliefs about their illness, their feelings, their body’s expression of symptoms and their own behaviour upon these domains*

20. Alice Green, Oldchurch Hosiptal, Essex Centre for Neurosciences 20 CBT interventions cont/… Thought diaries awareness of thinking Increase awareness of belief systems Re-labelling and Reinterpreting symptoms Reducing symptom-focusing behaviours Normalising rather than Catastrophising Experiments e.g. Graded activity and effect upon attributional style

21. Alice Green, Oldchurch Hosiptal, Essex Centre for Neurosciences 21 Cont…. Eradicate “boom and bust” mode Challenging Perfectionist beliefs Anxiety management skills Increasing Internal Locus of Control Re-education re CFS precipitators and perpetuators and treatment programme

22. Alice Green, Oldchurch Hosiptal, Essex Centre for Neurosciences 22 However… Interpersonal Relationships – Systemic issues Adjustment difficulties – Impact upon life Identity issues Personality Disorders / Other co-morbidities Coping with Losses due to CFS (e.g. job / education / friendships) CBT does not address some other important issues…

23. Alice Green, Oldchurch Hosiptal, Essex Centre for Neurosciences 23 Conclusions In order to help patients work towards recovery in CFS/ME there needs to be a shared understanding between client and practitioner of the underlying psychological factors maintaining CFS/ME Alongside other therapies, CBT can be used to increase awareness of patients’ CFS/ME and to help them make the necessary changes to reduce some of their symptoms.

24. Any Questions?….

25. Thank You! Alice E. Green, Highly Specialist Counselling Psychologist Chronic Fatigue Syndrome Team, Essex Centre for Neurosciences, Oldchurch Hospital, Waterloo Road, Romford, Essex RM7 0BE Alice.Green@bhrhospitals.nhs.uk 01708 708 052