The Biopolitics of Chronic Fatigue Syndrome Thesis submitted for the degree of Doctor of Philosophy at the University of Leicester by Nikos Karfakis School of Management University of Leicester March 2013 Abstract The Biopolitics of Chronic Fatigue Syndrome by Nikos Karfakis This thesis approaches Chronic Fatigue Syndrome (CFS) as a biopolitical problem, that is as a shifting scientific object which needs to be studied, classified and regulated. Assemblages of authorities, knowledges, and techniques make CFS subjects and shape their everyday conduct in an attempt to increase their supposed autonomy, wellbeing and health. CFS identities are, however, made not only through government, scientific and medical interventions but also by the patients themselves, a biosocial community that collaborates with scientists, educates itself about the intricacies of biomedicine, and contests psychiatric truth claims. CFS is a socio-medical disorder, an illness trapped between medicine, psychology and society, an illness that is open to debate, and therefore difficult to manage and standardise. CFS is, thus, more than a fixed and defined medical category; it is a performative and multiple category, it is a heterogeneous world. This thesis studies that performative complexity by assembling different pieces of empirical data that constitute its heterogeneity: medical and psychiatric journals and monographs, self-help books, CFS organisations’ magazines, newsletters and websites, illness narratives and social studies of CFS, CFS blogs, and qualitative interviews with diagnosed CFS patients and CFS activists. The thesis delineates different interventions by medicine, science, the state and the patients themselves and concludes that CFS remains elusive, only partially standardised, in an on- going battle between all the different actors that want to define it for their own situated interests. i Acknowledgements I would like to take the opportunity to thank all those people without whom I would not have been able to complete this study. First of all, I want to thank all the people diagnosed with CFS who participated in my research for their trust and support. Many thanks to my supervisors, Dimitris Papadopoulos and Simon Lilley, for their trust, encouragement, and intellectual stimulation. They did everything possible to guide me, boost my confidence, and always have had time for me. I am indebted to them. I also want to thank Steve Brown, who introduced me to CFS and advised me at an early stage of the study. Mnay thanks also to my mother, Eleftheria Karfaki, for her financial and emotional support. Thanks to George Kokkinidis for reading some chapters of my study and for the often long discussions we had on a variety of issues. Thanks also to Juan Espinosa for the equally diverse and long discussions that we had. I cannot but refer to the exciting and intellectually vibrant community at the School of Management, University of Leicester. I would also like to thank all my friends in Leicester and in Greece for their emotional support. Finally, I thank all the people who assisted me during this journey. ii Table of Contents Abstract i Acknowledgements ii Table of Contents iii List of Figure and Tables v Figures v Tables v Abbreviations vi Introduction 1 Chapter One: The Biopolitics of CFS 10 The Biopolitics of CFS 10 The Politics of Scientific Objectivity 22 The Multiplicity of Politics 27 Research Questions 30 Chapter Two: Researching CFS 32 Research Design 35 Primary Empirical Study 36 Collection of Data and Analysis 41 Chapter Three: Towards a Genealogy of Fatigue and CFS 48 Vapours and Nerves 49 Neurasthenia and Da Costa’s Syndrome 53 Immunology and Stress 64 Chapter Four: Making CFS Objectivity 74 CFS: A Heterogeneous Object 74 The Nosology and Diagnosis of CFS 86 CFS Patients’ Organisations 101 Chapter Five: Standardising Through Intervening 112 In Search of Energy 112 Clinical Trials 128 iii Fatigue’s Cerebralisation? 135 The ‘Discovery’ of the XMRV Virus 142 Chapter Six: The Work Regulation of CFS 154 CFS and Precarity 156 Labour-Power and Disability 174 Measuring Fatigue 176 Chapter Seven: Conclusion 187 The Emergence of Fatigue 187 From Fatigue to CFS 190 CFS as a Scientific Mystery 192 Standardising CFS, Optimising Energy 195 CFS as a Welfare Problem 202 Appendix 207 Table of Themes 207 Notes 209 Bibliography 215 iv List of Figure and Tables Figures 1. Mosso’s finger ergograph 57 2. Photograph of one of the many fatigue experiments conducted in the 63 Harvard Laboratory between 1927 and 1952 3. Cartoon by Trish Campbell of the Warwickshire Network for ME 92 4. Regional differences between CFS/ME patients and controls 138 Tables 1. Example of a daily activity schedule 107 2. Published studies related to XMRV virus between October 2009 to June 2011 107-108 3. Unfunded applications to the MRC between 2002 and 2008 123 v Abbreviations AfME Action for M.E. APT Adaptive Pacing Therapy ADHD Attention Deficit Hyperactivity Disorder APA American Psychiatric Association APA American Productivity Audit APT Adaptive Pacing Therapy ARF Acute Renal Failure ASCL Association of School and College Leaders AYME Association of Young People with ME BA Benefits Agency BACME British Association for Chronic Fatigue Syndrome BRAME Blue Ribbon for the Awareness of ME CAB Citizens Advice Bureau CAM Complementary and Alternative Medicine CBT Cognitive Behaviour Therapy CDC Centre for Disease Control and Prevention CEBV Chronic Epstein-Barr Virus CIS Checklist Individual Strength CFCCC Chronic Fatigue Syndrome, Fibromyalgia, and Chemical Sensitivity Coalition of Chicago CFS Chronic Fatigue Syndrome CFSAC CFS Advisory Committee CFSCC CFS Coordinating Committee CFIDS Chronic Fatigue & Immune Dysfunction Syndrome CNCC Clinical Network Coordinating Centre CNS Central Nervous System CLASP Carers of Leicestershire and Support Project CSSD Complex Somatic Symptom Disorder CT Computerised Tomography DDS Depressive Disorders Study DLA Disability Living Allowance DSC DSM Diagnostic and Statistical Manual of Mental Disorders DTCA Direct-to-Consumer Advertising DWP Department of Work and Pensions EDS Excessive Daytime Sleepiness EBM Evidence-Based Medicine EBT Evidence-Based Treatment EBV Epstein-Barr Virus EC European Commission EMEA European ME Alliance ES Excessive Sleepiness ESA Employment and Support Allowance ESME European Society for ME ES Employment Service ESR Erythrocyte Sedimentation Rate vi FDA Food and Drug Administration FMS Fibromyalgia Syndrome FSD Female Sexual Dysfunction FSS Functional Somatic Syndromes GET Graded Exercise Therapy GP General Practitioner GWI Gulf War Illness HB Housing Benefit HE Healthy Eating HFME Hummingbird’s Foundation for M.E. HLA Human Leukocyte Antigen IACFS/ME International Association for Chronic Fatigue Syndrome/M.E. IB Incapacity Benefit ICD International Classification of Diseases IiME Invest in M.E. IS Income Support ISS Insufficient Sleep Syndrome LP Lightning Process LPT Lost Productive Time LSLY Low Sugar Low Yeast JCP JobCentre Plus JSA Job Seeker’s Allowance MBPS Munchausen’s by Proxy Syndrome MCL Mantle Cell Lymphoma ME Myalgic Encephalomyelitis MEA M.E. Association MES Medically Unexplained Symptoms MEG Magnetoencephalography MEG Monitoring and Evaluating Group MFMT Multifunctional Multitargeted MRC Medical Research Council MRI Magnetic Resonance Image NDA New Drug Application NDDP New Deal for Disabled People NEID Neuroendocrineimmune Deficiency Syndrome NI National Isurance NICE National Institute for Health and Clinical Excellence NIH National Institute of Health NIRS Near-Infrared Spectroscopy NHS National Health Service NLP Neuro-linguistic Programming NMEC National M.E. Centre NOW Netherlands Organization for Scientific Research NSAID Nonsteroidal Anti-Inflammatory Drug MCS Multiple Chemical Sensitivity MCS Maastrich Cohort Study ME Myalgic Encephalomyelitis MLV Murine Leukemia Virus MS Multiple Sclerosis MSC Manpower Services Commission vii PACE Pacing, Graded Activity and Cognitive Behaviour Therapy: A Randomised Evaluation PANDORA Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy, Inc. PI Principal Investigator PLDS Post Lyme Disease Syndrome PMS Premenstrual Syndrome PTSD Post-Traumatic Stress Disorder PVFS Post-Viral Fatigue Syndrome SAHS Sleep Apnea-Hypopnea Syndrome SMC Science Media Centre SMC Specialist Medical Care SNS Sympathetic Nervous System SSAC Social Security Advisory Committee RCT Randomised Clinical Trial UBO Unidentified Bright Object WBC White Blood Cells WHO World Health Organization WLQ Work Limitations Questionnaire WPI Whitemore Peterson Institute XMRV Xenotropic Murine Leukemia Virus-Related Virus viii Introduction After having been removed by force from her house and spent two years in a psychiatric hospital, 32-year-old Sophia Mirza was found dead on 25th November 2005.1 Sophia was affected by chronic fatigue syndrome (CFS), also known in the UK as myalgic encephalomyelitis (ME). CFS is a debilitating condition with a range of fluctuating symptoms which in its extreme manifestation constitutes patients bedridden. Scientists have for many years struggled to find its cause with no success. Some have suggested that there are physiological causes and in particular viral infections, and others that it is a psychological illness, a view that seems dominant. According to the account of Sophia’s mother, she had been told by her daughter’s general practitioner (GP) that Sophia had made herself ill and that she was keeping her ill as long as she was