Meanings of ME: Interpersonal and Social Dimensions of Chronic Fatigue

C. Ward

• Publisher: Palgrave Macmillan
• Year: 2015
• Print ISBN: 9781349691296, 9781137467317
• eBook ISBN: 9781137467324
• Topic: Psychology
• Subtopic: Medical Theory, Practice & Reference
• Index: Psychology

Chronic Fatigue Syndrome (CFS or ME) is a problematic diagnosis which can be interpreted in conflicting ways by doctors, patients and others. Meanings of ME signals a paradigm shift in thinking about the illness by providing fresh perspectives from doctors, clinicians and those who have personal knowledge of CFS/ME.

1

Introduction

Christopher D. Ward

The aim of this book is to explore how we think and talk about a medical condition for which even the name is controversial. We call it CFS/ME, but it is difficult to define our topic further without, at the same time, being committed to a specific concept of the condition. The meanings of CFS/ME, as a human situation, are constantly influenced by speakers and writers. In this introduction I begin by describing the book’s conception of CFS/ME as a label for a syndrome, a cluster of phenomena that ‘run together’. I then suggest that we can use the label, and be interested in its meanings, without considering what CFS/ME might ‘really’ be. This book does not address the cause of CFS/ME and its symptoms.

Existing ways of writing about CFS/ME are generally unable to accommodate the idea that symptoms and illnesses can have personal or interpersonal meanings. Greater openness to meanings is possible if we assume (1) that any given account of CFS/ME is a particular ‘punctuation’ of complex realities and (2) that the meanings people associated with CFS/ME do not form a fixed code but are developed discursively. For these reasons a multi-perspectival, systemic approach is needed in order to replace preconceptions with curiosity about the many meanings of CFS/ME.

The chapter ends with an overview of the rest of the book.

Many patients, and their doctors, are doubtful whether it is possible for physical symptoms to convey messages (signs) both from the physical organism and also from the patient as a person. If feelings of fatigue are generated by molecules called cytokines,¹ how can they be a reaction to a person’s present or past life? According to a prevalent view there is a stark choice: a psychological description of problems says that ‘the nature and content of your distress is personally meaningful, while a [medical] diagnosis says that it is meaningless. These assumptions cannot both be true’.² The present book is addressed to patients, clinicians and academics who wish to remain open to both possibilities. In a more didactic mode this book could have been called ‘How to Talk about Chronic Fatigue Syndrome’. We do not want to prescribe what to think, in the manner of a medical textbook. Instead, each of our contributors points towards how symptoms might be thought about and talked about more helpfully.

1.1 The problem of definition

An introduction is supposed to outline what a book is about, but this is not a straightforward task in the borderland between the physical, the psychological and the social. Even the name of our topic causes problems. Some people insist on ‘ME’, denoting ‘myalgic’ (muscle pain) and ‘encephalitis’ or ‘encephalopathy’ (inflammation or other pathology in the brain). Claims about causation are made by other labels that have been used, for example ‘chronic fatigue immune dysfunction syndrome’ (CFIDS) and ‘post-viral fatigue syndrome’. The most widely used medical label is chronic fatigue syndrome (CFS). We use the term ‘CFS/ME’ in this book because our purpose is to explore the personal and social significance – the meanings – of the diagnosis and its associated symptoms. We can do this without promoting any particular theory of causation. Similar issues arise with diagnoses such as fibromyalgia and irritable bowel syndrome, which are often associated with CFS/ME, and with any illnesses described as ‘medically unexplained’ or ‘functional’. Moreover any illness, explained or otherwise, has meanings.

But is there one kind of CFS/ME to talk about? The diagnosis continues to provoke controversy, which makes it a difficult topic to speak and write about coherently. Whatever one says about CFS/ME tends to become polarised by emotionally charged questions such as: ‘Is it real?’; ‘Is it a physical illness?’; ‘Is it a psychological disorder?’; ‘Is it neurological?’. Those who prefer the term ‘ME’, with its biological overtones, communicate belief in a fundamentally physical cause and also perhaps resistance to the notion that psychological factors generate symptoms. Conversely, ‘CFS’ is interpreted by some as undermining the assumption that symptoms are physically based; and for many, only physical symptoms are real.

It seems sensible to begin with a definition of CFS/ME, but any definition we choose will align us with a particular version of reality. This would be unhelpful here because we cannot assume that all the personal and social meanings we wish to explore can be attached to a specific disease entity. ‘Flu’, for example, is a useful word for many people but our wish to understand what a patient or a doctor or a website might mean by ‘flu’ requires us to have a flexible attitude to our own presuppositions. The problems associated with naming CFS/ME, along with the difficulties raised by terms such as ‘medically unexplained’ and ‘functional’, demonstrate the circular relationship between what we are writing about and the way we write; the name we choose pre-defines the object under discussion, as will become clearer later. ‘Medically unexplained chronic fatigue’, ‘CFS’ and ‘ME’ are not identical topics, and the way CFS/ME is framed determines what is conceivable and what is inconceivable. A clinical text necessarily creates a CFS/ME that matches medical parameters, and a piece of social science writing creates something rather different. In order to be open to all these meanings – all these ‘CFS/MEs’ – we are going to set questions of causation aside in this book.

In what follows I will describe the kinds of writing we are attempting within a confusing array of medical, psychological, and sociocultural perspectives; this is neither a medical text, nor a psychosocial critique of medicine. Subsequent chapters will offer multiple perspectives on CFS/ME. What binds them together is the notion that meanings arise from contexts. Ideas from ‘systemic’ (human systems) theory provide one way of expressing this.

1.2 Dimensions of ‘meaning’

The word ‘syndrome’ denotes phenomena that ‘run together’. Patients, doctors and others have used different words at different times to describe a syndrome in which fatigue is combined with other symptoms in the absence of an alternative medical diagnosis. CFS and ME are two of those names and neurasthenia (see Chapters 4 and 5) is another. Identifying a syndrome such as CFS/ME acknowledges that certain sets of human circumstances have what Wittgenstein called family resemblances,³ without presupposing what the nature of the relationships might be. We speak of a syndrome when, for one reason or another, we wish to identify a collection of phenomena without identifying their cause. Malabsorption syndrome, for example, describes a range of problems that have several different causes.

The way we chunk experience up into syndromes is provisional. The meanings attributed to syndromic labels such as ‘Asperger’s syndrome’ have come and gone in the history of medicine, with different parts of them absorbed into other categories. Rates of diagnosis of neurasthenia in the United Kingdom, for example, rose sharply in the late nineteenth century, and then petered out in the twentieth. These changes reflected changing attitudes to symptoms rather than variations in the frequency of symptoms⁴ (see Chapter 5). The cluster of symptoms that we currently call CFS or ME can be found among most communities that have been studied in the modern world but the frequency with which they are identified medically as a distinct condition is highly variable. Among 90 people meeting research criteria for CFS in a community-based survey in Wichita, Kansas, only 14 (16%) had been diagnosed as such prior to the survey.⁵ The authors of this study concluded that ‘most cases of CFS in the [US] population are unrecognized by the medical community’. It would be no contradiction to put this differently; only in a minority of Wichita citizens are the meanings of CFS-like symptoms interpreted as a distinct medical illness. The two interpretations channel our curiosity in different directions. By focusing on meanings, the present book triggers questions such as: How might the undiagnosed Americans in Wichita themselves have thought about their fatigue? What would have been the meaning for these individuals, or for the public health system, of their receiving the diagnosis of CFS/ME?

These questions call attention to the negative and also the positive consequences of labels, a topic to which we will return in Chapter 13. Naming a syndrome can certainly be a positive achievement, not solely for science but also for communication. A scientific viewpoint encourages us to speculate about what CFS/ME ‘really is’ but these are not the only questions that are worth asking. We can also explore the way the concepts of such syndromes operate in ordinary life. One benefit of a focus on meanings is that we grow to understand one another better, and another is that we become more resistant to mystifications put about by competing interest groups in relation to a medical diagnosis.

Having unpacked some difficult issues raised by the book’s title (‘CFS’, ‘syndrome’, ‘interpersonal and social’) I can no longer postpone addressing that other tricky word, ‘meanings’. As I implied earlier, clinicians and researchers and also those diagnosed with CFS/ME seem to be confronted with a choice: either the illness is biological and therefore meaningless, or else it is ‘psychogenic’ and therefore meaningful. Both sides of this dichotomy are concerned with the same question: how can we explain CFS/ME? Psychologists and psychiatrists have explanatory models in mind when they refer to ‘cognitions’ or ‘attributions’ as factors that predispose to illness or perpetuate it (see Chapter 8). When we use this sort of language we are certainly in the domain of meaning, but with a particular picture in mind. An individual whose thoughts are making her ill is seen as deviating from a norm: her cognitions and attributions are conceptualised as pathogens. This perspective provides a rationale for cognitive behavioural psychotherapy (CBT) as a means of shifting thoughts and feelings towards a healthier – more ‘normal’ – direction.

In this book we do not consider that meanings are normative and we are therefore wary of words such as ‘cognitions’ and ‘attributions’. Even a word such as ‘fatigue’ lacks a single meaning (see Chapter 6). We think of meanings as created between people. Meanings are thus keys to the way CFS/ME is talked about and thought about within intimate, professional, and other relationships, and in the wider world. We must constantly take account of ‘the peculiar way in which any part of a discourse, in the last resort, does what it does only because the other parts of the surrounding, uttered or unuttered discourse and its conditions are what they are’.⁶ Meanings, in this sense, are a function of context.

1.3 How can ‘meanings’ make sense in CFS/ME?

We wish to maintain an interest in meanings but this raises theoretical and also ethical problems. A physician who focuses primarily on the ‘meaning’ of a failing heart rather than on a practical remedy is not likely to be getting to the heart of the matter: more probably she or he is abusing power. Using TB and HIV/AIDS as examples Susan Sontag warns against endowing pathophysiological events with moral and cultural significance.⁷ Surely (bio)medicine concerns diseases that cannot contain messages about, or for, the victim?

The ‘medical model’ symbolises impersonal, mechanistic attitudes that everyone deplores, and that has little interest in meanings. Real twenty-first-century doctors are mostly somewhat to the ‘left’ of this classic notion. The medical co-authors of the UK’s NICE Guidelines,⁸ for example, would probably describe their formulation as biopsychosocial. This term indicates an awareness of non-physical factors in the generation of symptoms but not necessarily an interest in the meanings of illness. It is as well to remember that the biopsychosocial model originated within psychiatry⁹ and that its function was not to discount the concept of mental illnesses but rather to clarify their dimensions. A biopsychosocial lens does not prevent CFS/ME from being defined normatively and measured and managed as an object of the same general kind as, say, thyroid disease.

If biopsychosocial medicine is somewhat to the ‘left’, there is a another species of medical theorising that lies to the ‘right’ of orthodox medicine. A vocal part of the CFS/ME community occupies a parallel universe of medical theorising, for example about the role of subcellular organs called mitochondria.¹⁰ Such theories attract those who for one reason or another suspect mainstream scientific medicine of failing in its duty to help patients diagnosed with CFS/ME. There may be a sense that the power of science is being held back, as suggested by the magazine and website ‘What the Doctors Don’t Tell You’.¹¹ Here, personal meanings are not the issue at all. Medical interpretations of illness are strongly promoted, and doctors are urged to stick to (biological) science rather than indulge in psychologising. Hostility to mainstream medicine thus leads some patients and practitioners to build an alternative orthodoxy in which the biomedical identity of CFS is absolute.

If biomedical models are as far as one can imagine from an interest in meanings, psychoanalysis would surely be their antithesis. Psychodynamic interpretations view symptoms as primarily the carriers of meaning. There have been few attempts to describe CFS/ME in this way; some are mentioned in Chapter 8. CBT is a more frequently applied interpretative approach, in which feelings and cognitions are central.¹² Despite their apparent distance from medical explanations both the psychoanalytic and th...

Table of contents

• Cover
• Title
• Copyright
• Contents
• List of Figures and Tables
• Preface
• Notes on Contributors
• 1 Introduction
• Part I Ways of Speaking
• Part II Personal, Interpersonal and Public Meanings
• Part III Patients, Doctors and Identities
• Index