The Importance of Psycho-social Aspects in Developing Chronic Fatigue Syndrome. Professor Trudie Chalder King s College London

Transcription

1 The Importance of Psycho-social Aspects in Developing Chronic Fatigue Syndrome Professor Trudie Chalder King s College London

2 So what is fatigue It is a subjective symptom It is a private experience You cannot see it You can t measure it objectively It is best viewed on a continuum There is no disputing it is real You can use self report measures

3 Chronic Fatigue Syndrome This disorder is characterised by profound, incapacitating chronic fatigue, which is unexplained by physical or mental illness, does not improve with rest and is associated with a variety of physical complaints. In children and adults, there is considerable controversy about the nature of the syndrome, i.e. whether it is best understood and managed within a medical or a psychiatric framework

4 Chronic Fatigue Syndrome in Children Diagnostic criteria the same as for adults In specialist settings there is a bias towards higher socio economic groups Children often have long histories of absence from school and impairment in social and leisure activities

5 How common is fatigue in children in a UK community study? 24 / 4,240 (0.56%) were chronically fatigued 8 / 4,240 (0.19%) year olds had CFS operationally defined 4 / 10,438 (0.04%) 5-15 year olds had CFS/ME according to their mothers

6 No concordance between parental report and operationally defined CFS in the children A strong association between anxiety disorders and chronic fatigue and CFS (Chalder, Goodman Wessely et al, BMJ. 2003)

7 What is associated with fatigue prospectively? 842 adolescents were assessed at 2 time points (4-6 months apart) Older age, being female, anxiety, depression, and conduct disorder, were associated with new onset fatigue ¾ CFS cases had a psychiatric disorder (Rimes, Goodman, Hotopf, Wessely, Meltzer, Chalder 2006)

8 Co-morbidity Overlap with other subjective health complaints Aches and pains, tiredness, dizziness and blackouts are common symptoms in adolescents (Garralda, 1996) Clear evidence of heterogeneity Some evidence exists for the existence of specific symptom clusters

9 Co-morbidity Co-morbid anxiety and depressive disorders have been documented from research interviews in between a half and threequarters of severely affected children with CFS (Carter et al 1995; Garralda et al 1999) In a case-control study, children with CFS showed significantly increased psychological distress, with internalisation, withdrawal, and socialisation difficulties compared with healthy controls.

10 There is often a mismatch between patients experience and health professionals perspective Health professionals tend to dichotomise i.e. the problem is either medical or psychiatric If seen by Physician, patient is often told there is nothing wrong with you and sent to see the Psychiatrist Clearly patients do have something wrong with them but they are not mad and do not necessarily need to see a psychiatrist Misunderstandings occur and communication starts to break down

11 Some possible explanations? Research findings show higher levels of psychopathology in CFS patients than healthy controls Health professionals use terms such as depression and anxiety Although possibly stressed patient may not feel comfortable with language used by health professional Why are patients not happy with labels such as anxiety and depression

12 Alexythmia Alexithymia is considered an important risk factor for somatic illness in general Alexithymia has been defined as a deficit in cognitive processing and regulation of emotions, characterized by difficulties in describing and differentiating emotions and a cognitive style focused on external events instead of inner experience In CFS, adolescents scored higher than healthy controls on the subscale identifying feelings on the Toronto Alexythmia Scale (Van de Putte 2007)

13 Beliefs about Emotions (Rimes & Chalder) CFS participants have more unhelpful beliefs about experiencing & expressing negative emotions than controls CFS Control Subscale Mean (SD) Mean (SD) Experiencing negative 11.8 (5.1) 9.7 (4.5) * p<0.05 thoughts & feelings Revealing difficulties & 10.8 (5.8) 8.6 (4.3) * p<0.05 emotions to others Reactions of others 9.8 (6.1) 8.3 (4.2) Total 32.7 (15.9) 26.3 (11.9) * p<0.05 Factor analysis indicated one factor only Cronbach s alpha: 0.92

14 Emotional expression, self-silencing and distress tolerance in Anorexia Nervosa and CFS We explored distress tolerance, self-silencing, and beliefs regarding the experience and expression of emotions in individuals with anorexia nervosa (AN), CFS and healthy controls AN & CFS patients scored more highly on Silencing the Self Scale, Distress Tolerance Scale CFS participants were more likely to present an outwardly socially compliant image of themselves whilst feeling hostile within Both AN and CFS participants were more likely than HC s to judge themselves by external standards

15 Are patients suppressing their emotions We found that patients with CFS were more likely to suppress their emotions than controls; suppression was characterised by high levels of anxiety and high social desirability (Creswell & Chalder 2001) Similarly, our recent fmri study suggested that, in CFS patients, anxiety provocation was associated with greater emotional regulation compared to controls, whereas the provocation of fatigue was associated with exaggerated emotional responses that patients may have difficulty regulating (Caseras et al 2008)

16 Summary In summary it appears that patients with CFS have some difficulty regulating their emotions It is possible that they are trying too hard to control their emotions because they feel it is unacceptable to show them

17 Model of understanding CFS/ME in children Predisposing or vulnerability factors (personality / genetics / learning) Precipitating factors or triggers (i.e. illness / stress) Perpetuating factors (cognitive, behavioural, affective, social, physiological responses)

18 Vulnerability factors

19 Personality (adolescents) Birth cohort shows that emotional instability (neuroticism) and pre-morbid stress are risk factors for CFS in adulthood (Kato et al 2006) Using the Personality Assessment Schedule children with CFS are more introspective, sensitive, conscientious, rigid and hypochondriacal (anankastic), or aloof, shy and eccentric than normal controls (Garralda & Rangel)

20 Vulnerability factors Adults with CFS retrospectively report increased CSA, physical abuse, emotional abuse, emotional neglect, physical neglect (Heims 2006; Archives of Gen Psych)

21 Parental influences CFS adults report their parents as being overprotective, compared to controls (Fisher & Chalder 2003); observations in clinic support this view Distress in mothers associated with fatigue in child (Chalder et al 2003; Rimes et al 2006)

22 Mirrored symptoms in mother and child Levels of fatigue and psychological distress were assessed in mothers, fathers and their children with CFS and healthy controls Psychological distress in the mother corresponded with an adjusted odds ratio of 5.6 for the presence of CFS in the child (8.4 for depression) The presence of fatigue in the mother revealed odds ratios of 5.29 for the presence of CFS in the child. No association between fathers and CFS in children (Van de Putte 2006)

23 Perfectionism (adults) Adults with CFS report higher levels of unhealthy perfectionism (checking) than healthy controls (White & Schweitzer 2000; Deary & Chalder) Perfectionism has not been tested directly in children but high self expectations have

24 High expectations relate to activity and symptoms Children under-estimated current levels of activity & voiced a desire to achieve higher levels of activity in the future than they expected to achieve (Fry & Martin 1996) CFS adolescents under-estimated the level of fatigue they expected to experience compared to healthy controls (Garralda & Rangel 1999)

25 High expectations related to performance 28 children with CFS and 29 age sex matched healthy controls Measures: Child and parent perception of adolescents intelligence based on norms in the population AH4 group test of general intelligence (Heim 1970) Results: Parents of children with CFS over-estimated the child s actual IQ. Discrepancy between actual IQ and perception was greater than age gender matched controls (Coddington & Chalder 2003)

26 Predisposing factors Evidence points to shared interplay between genetic vulnerability and environmental factors

27 Triggers Infections Some evidence from adult literature that severe viruses can lead to long lasting fatigue (although prolonged bedrest and past distress contribute to the model) Stress Onset of fatigue often associated with change of school, bullying

28 A potential case of misattribution Symptoms of stress may not be recognised as such The cause of fatigue is a mystery Individual searches for a cause Fatigue attributed to an unspecified disease: labels such as CFS or ME have different aetiological implications:

29 Symptom attribution: the evidence In naturalistic follow up studies physical illness attributions predict a poorer outcome in adults (Chalder et al ; Sharpe et al 1992; Wilson et al 1994) Physical illness attributions in the family predict a poor outcome in children

30 Perpetuating factors:

31 Symptom focusing In adults symptom focusing was associated with more symptoms and disability in untreated groups of adults with CFS (Ray et al 1995; Bentall et al) Symptom focusing predicted a poor outcome following CBT (Prins et al) A reduction in symptom focusing mediated improvement in fatigue following graded exercise (Moss-Morris 2005) In a cross sectional study of children with CFS, those who thought negatively about the consequences of their illness focused more on symptoms, reported more psychological difficulties and tended to avoid activities (Henderson et al)

32 Summary Sensitive child High standards (? Responding to perceived demand of parent) / inflexible coping, idiosyncratic beliefs) Stress or illness precipitates fatigue Perpetuated by misattribution, fearful cognitions and avoidance behaviour