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The Psychological Aspects and Management of Chronic Fatigue Syndrome

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The Psychological Aspects and Management of Chronic Fatigue Syndrome THE PSYCHOLOGICAL ASPECTS AND MANAGEMENT OF CHRONIC FATIGUE SYNDROME A Thesis submitted for the degree of Doctor of Philosophy by Ellen Marianne Goudsmit Department of Human Sciences, Brunel University February 1996 ACKNOWLEDGEMENTS The three studies could not have been completed without the help of a large number of people. First of all, I would like to thank my supervisors, Dr. Colette Ray and Mr. Ian Robinson, who have guided me with great skill and infinite patience. I am also grateful to Dr. Elizabeth Dowsett, Dr. Gordon Parish and Dr. Darryl Ho-Yen, who not only gave me practical assistance and scientific advice, but who also encouraged and supported me throughout. Thanks are also due to Lorna Wycherley for sending out the questionnaires for Study 3, to the staff at Richmond and Teddington libraries who obtained several hundred articles and books for me, to the Training Agency who loaned me a computer and printer, to Dr. Inge Heinrich and the support team at Brunel's Computer Centre for their statistical advice, to Frouke Bates and to Action for M.E. who funded Study 2. Finally, I wish to thank my parents, Abraham and Felicie Goudsmit, for all their help during the past six years, my friends, Deana Goff and Sandra Howes for their continuing interest and support and my colleagues, Drs. Charles Shepherd and Anne Macintyre for helping me make sense of a very complex subject. Most of all, I would like to thank everyone who took part in the studies for their time and their trust. Without their co-operation, this research would not have been possible. ABSTRACT Chronic fatigue syndrome (CFS) describes a condition characterised by severe fatigue of at least six months' duration. In this thesis, it is argued that the complexity of CFS with respect to other symptoms, the patients' response to their illness and the determinants of emotional distress, has yet to be fully recognised. This may have narrowed the focus of research and limited the range of treatments available. The first of the three studies investigated CFS from the patients' perspective. The findings challenge some of the generalisations concerning CFS, particularly those relating to the patients' attributions and their choice of coping strategies. They also suggest that the effects of the condition may have been underestimated and that certain influences on emotional distress may have been overlooked. The second study assessed a number of variables thought to be associated with emotional distress and psychological adjustment. The results show that uncertainty and lack of social support were significantly correlated with anxiety and depression while functional impairment was more closely linked to cognitive difficulties and other illness-related measures. The third study evaluated a management programme which acknowledges the complexity of CFS. After six months, significant differences between the treated patients and waiting-list controls were found for a number of variables, including fatigue, somatic symptoms, anxiety and perceived self-efficacy. However, many patients continued to record high levels of emotional distress, showing that the programme was not sufficient to deal with all the problems experienced. The findings suggest that variables such as uncertainty, lack of social support, self-efficacy and illness severity may all play an important role in the psychological ad- justment to CFS. Increased awareness of these possible influences may further enhance understanding of this illness and thus improve patient care. ABSTRACT ABBREVIATIONS vii CHAPTER 1: Myalgic encephalomyelitis and chronic fatigue syndrome. A brief review of the literature. 1.1 Introduction 1 1.1.1 Historical background 1 1.1.2 Sporadic cases 3 1.1.3 Chronicity 4 1.1.4 The mass hysteria debate 6 1.2 Current terminology and definitions 9 1.2.1 Disadvantages of the criteria for CFS 11 1.2.2 The diagnosis of ME 13 1.2.3 CFS(ME) versus other fatigue states 14 1.2.4 CFS(ME) and fibromyalgia 17 1.3 The clinical picture of CFS(ME) 17 1.4 Epidemiology 19 1.5 Research into CFS 21 1.5.1 Research focusing on the role of viral infections 21 1.5.2 Evidence of disease in brain and muscle 25 1.5.3 Research assessing the immune system 28 1.5.4 Miscellaneous theories 34 1.5.5 Research into the psychological and psychiatric aspects of CFS(ME) 37 1.6 Treatment 46 1.7 Discussion 48 CHAPTER 2: Reactions to chronic illness and disability 2.1 The process of adjustment 51 2.1.1 The psychological response to illness and disability 55 iii 2.2 Factors affecting psychological adjustment 60 2.2.1 The effects of social and economic problems on psychological adjustment 60 2.2.2 The problem of stigma 61 2.2.3 The effects of demographic and illness- related variables 62 2.2.4 Psychological factors 67 2.2.5 The relationship between coping and psychological adjustment 77 2.2.6 The role of culture 82 2.2.7 The role of social support 83 2.3 Discussion 92 CHAPTER 3: Study into the experiences of patients with chronic fatigue syndrome 3.1 Introduction 97 3.2 Research aims 99 3.3 Method 99 3.3.1 The interviews (Group 1) 100 3.3.2 The questionnaires (Group 2) 101 3.3.3 Design 101 3.4 Results 102 3.4.1 Analysis 102 3.4.2 Demographic data 103 3.4.3 Data on the nature of the illness 107 3.4.4 Main symptoms 107 3.4.5 Attributions regarding the illness 110 3.4.6 The effects of the illness 117 3.4.7 Coping 128 3.4.8 Advice to others 135 3.4.9 What having CFS meant to the patients 137 3.4.10 Views of the future 140 3.5 Discussion 142 3.5.1 Symptoms 142 3.5.2 Beliefs about causation 143 3.5.3 The effects of CFS 146 iv 3.5.4 Coping with the symptoms 150 3.6 Questions arising out of the research 155 3.7 Summary 155 CHAPTER 4: Study into the psycho-social sequelae of chronic fatigue syndrome (myalgic encephalomyelitis) 4.1 Introduction 157 4.1.1 The role of psycho-social factors in CFS 160 4.2 Research aims 164 4.3 Method 181 4.3.1 Sample characteristics and procedure 181 4.3.2 Measures 183 4.4. Results 189 4.4.1 Initial analysis 190 4.4.2 The CFS(ME) group 190 4.4.3 The SCI group 192 4.4.4 Comparison between the groups 193 4.4.5 Relationship between variables 198 4.5 Discussion 214 4.5.1 Adjustment to CFS(ME) and SCI 215 4.5.2 Variables associated with adjustment 217 4.5.3 Methodological issues 225 4.5.4 Questions arising from the research 227 4.6 Summary 229 CHAPTER 5: Learning to cope with post-infectious fatigue syndrome. A follow-up study. 5.1 Introduction 231 5.1.1 Are broad-based programmes helpful for patients with CFS? 237 5.2 Research aims 241 5.3 Method 241 5.3.1 Sample characteristics and procedure 241 5.3.2 Details of questionnaires 244 5.4 Results 248 5.4.1 Statistical analysis 248 5.4.2 Demographic information 250 5.4.3 Information about the illness variables 251 5.4.4 Changes associated with treatment 253 5.4.5 The relationships between variables 260 5.5 Discussion 263 5.5.1 The effects of treatment 263 5.5.2 The possible variables underlying emo- tional distress and functional impairment 268 5.5.3 Methodological issues 270 5.6 Summary 273 CHAPTER 6: Summary, conclusions and recommendations for future research 6.1 CFS and its effects: the patients' perspective 275 6.2 The emotional distress associated with CFS 278 6.3 The relationship between illness, coping and adjustment 279 6.4 The role of uncertainty 282 6.5 The role of social support 283 6.6 Coping with CFS 285 6.7 The effects of treatment 287 6.8 The role of the medical profession 288 6.9 Methodological issues 290 6.10 An alternative model of CFS 293 6.11 The stigmatisation of CFS 295 6.12 Final remarks 298 REFERENCES 300 APPENDICES ACKNOWLEDGEMENTS vi ABBREVIATIONS CBV Coxsackie B virus CFS Chronic fatigue syndrome CFS(ME) Patients diagnosed with myalgic encepha- lomyelitis or post-viral fatigue syndrome CFS(PIFS) Patients who fulfil criteria for post- infectious fatigue syndrome DSM-III-R Diagnostic and Statistical Manual of Mental Disorders Third Edition-Revised EBV Epstein-Barr virus HAD Hospital Anxiety and Depression Scale IMQ Illness Management Questionnnaire MUIS Mishel Uncertainty in Illness Scale PFRS Profile of Fatigue-Related Symptoms SCI Spinal cord injury vii CHAPTER_ 1 -.11,14im 1 -n• hr ni n•r•m- A. brief review of the literature 1.1 Introduction Chronic fatigue syndrome (CFS) is the term used to describe a number of disorders characterised by disabling, ongoing fatigue. Although the nomenclature for these conditions is comparatively new, the disorders themselves are not. Indeed, references to illnesses closely resembling CFS have been documented in the British literature since 1750 (Bakheit 1993). Some cases of CFS are closely associated with and may represent psychiatric disorders (David 1991, Hickie et al 1995, Wessely 1994). Others have been linked with infections such as glandular fever and Lyme disease (Bruce-Jones et al 1994, Coyle et al 1994) and exposure to toxins (Behan and Haniffah 1994, Chester and Levine 1994). However, much of the attention in recent years has focused on a mysterious illness known as myalgic encephalomyelitis (ME) or post- viral fatigue syndrome (PVFS).
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