Understanding self-experience in adolescent chronic fatigue syndrome

Abstract

A striking feature of the chronic fatigue syndrome (CFS) is the lack of consistent findings of pathology. While there has been a continuing search for the etiology and pathogenesis of the syndrome, there has been relatively little interest in a clarification of the experiential phenomena underlying its symptoms. The first aim of this thesis was to come to a better understanding of adolescent patients’ self-experience. The second aim was to test whether counseling based on their self-experience would lead to an improvement of their health. Chapter 1 describes the background against which the thesis’ main study was initiated. The main aim of this chapter was to review the available personality research in CFS. Overall, on the trait level of personality there seem to be very few consistent findings. Therefore it was hypothesized that new insights into personality and self-experience in CFS might be gained by systematically studying the self-positioning and affective self-narratives of patients with CFS. Chapter 2 describes some of the baseline measurements of this thesis’ research, and also introduces the study’s main theoretical assumptions with regard to the self and self-experience. In this chapter, the findings with regard to the self-positioning of 42 adolescents with CFS, 37 adolescents with Juvenile Idiopathic Arthritis (JIA) and 23 healthy teenagers are presented. It was found that adolescents with CFS report severe physical difficulties and psychosocial problems. They positioned themselves as significantly less strong and more unwell in their social relationships in comparison to healthy adolescents, and patients with JIA. There was a strong indication that positions relating to illness were overly dominant. Chapter 3 describes a further investigation of these findings, and addresses the patients’ affective life-stories underlying the self-positioning as reported in the previous chapter. In this chapter, it was found that adolescents with CFS report significantly less positive experiences of autonomy and success, in comparison to healthy adolescents. In addition, adolescents with CFS described significantly more negative experiences of powerlessness, isolation, and unfulfilled longing compared to healthy teenagers and adolescents with JIA. Chapter 4 presents the results of a separate follow-up study into the prognosis of adolescent CFS after regular treatment. About half of the adolescents had recovered from CFS at follow-up. However, the other half was still severely fatigued and physically impaired, indicating that despite intensive health care use a substantial proportion of adolescent patients with CFS remain symptomatic for a considerable time. Chapter 5 presents the results of the main study into narrative self-investigation in adolescent CFS. It was concluded that self-investigation not only enables change in the symptoms of CFS, but also of the underlying self-experience of adolescents, in an individualized, patient centered manner. Narrative transformation seems to contribute to improved physical and psychosocial outcome in adolescent CFS. The SCM allows adolescents to discover (for themselves) factors that might cause or perpetuate their fatigue. Chapter 6 is the general discussion. In this chapter it was argued that underlying the overwhelming experience of fatigue and functional impairment there is a profound alteration of adolescents’ relational, emotional and bodily self-experience