Chronic Fatigue Syndrome

Rona Moss-Morris, Keith Petrie

• Publisher: Routledge
• Year: 2002
• ISBN:
  9781134632831
• Edition: 1
• Topic: Medicine
• Subtopic: General Health

Chronic Fatigue Syndrome is one of the most enigmatic medical disorders of our time, striking adults most often in their most productive years. With the controversial debate over cause and treatment of the illness in mind, the authors seek to unravel many of the questions surrounding the disorder and its features and characteristics.
Integrating an overview of the latest research with patients' personal experiences, they look at CFS in relation to:
* clinical features
* personal and economic implications
* biological and psychosocial factors
* experiencing symptoms
* coping with the illness.
This book will provide hope for people with chronic fatigue syndrome and will assist health professionals in working with people with CFS to improve their quality of life.

Chapter 1
Chronic fatigue syndrome

Then and now

Most of us have felt unduly tired at some time or another. While this sensation is often unpleasant, the impact on our lives is seldom profound.
We may cut down on certain commitments, but in most instances we can continue to perform our day-to-day tasks. However, for some people, like Judy, the experience of fatigue is devastating and ongoing. In describing her nine-year battle with fatigue, Judy explains:

I had no energy or drive whatsoever. I used to feel that I had fifty-pound weights on each foot and about thirty-pound weights on each wrist. I had this terrible dragging feeling in both the physical and mental sense. Writing out a few cheques would be too much. Getting the rubbish bags organised and put out on Tuesday mornings was a dreaded chore. It was as though I had seized up.

(Judy 1991:39)

Another sufferer of chronic fatigue, Dr Robbie Lopis, a general practitioner, describes how after a viral illness and six weeks rest he returned to work part time only to find that:

I could only manage two hours of consulting before I was absolutely exhausted. I was forced to move around on a chair with wheels to examine patients. I did not have the strength to inflate a baumanometre bulb and I had to refer my patients to my partners to have their ears syringed as my arms were too weak to draw water into the barrel.

(Lopis 1995:16)

In many cases of profound fatigue a psychiatric or medical diagnosis can account for these symptoms. However, for some patients, as in Dr Lopis's case where a ‘barrage of medical tests came back normal’, such fatigue cannot be explained by any single diagnosis. In these cases fatigue is usually accompanied by a range of other unpleasant symptoms such as mental confusion, muscle and joint pains and severe headaches. Over the past two decades special attention has been given to these patients and the causes of this debilitating fatigue have been hotly debated.

Early reports in the 1980s regarded persistent unexplained fatigue as a psychosomatic reaction to the stressors of modern society. Because the illness appeared largely to afflict young up-and-coming professionals, it became unkindly referred to as ‘yuppie flu’. Advocates and sufferers of the illness concurred that the disease was a reaction to the overload of the twentieth century, but strongly rejected the notion that the illness might be psychological in origin (Wessely 1997). Rather, they favoured explanations which included twentieth-century pollutants, toxins, diets, viruses, and weakening of the immune system. A plethora of names for the condition arose, such as chronic immune deficiency syndrome, postviral fatigue syndrome, and myalgic encephalomyelitis (ME), each reflecting assumptions about the possible organic nature of the illness (Steincamp 1989). In response to the nomenclature controversy and in an attempt to define a homogeneous group of patients for research purposes, the Center for Disease Control and Prevention (CDC) in Atlanta renamed the condition chronic fatigue syndrome or CFS (Holmes et al.1988). Despite claims that CFS is a malady of the past couple of decades, it does in fact have historical predecessors. This chapter reviews the history behind CFS to provide a framework for understanding both the contemporary definitions of the illness and some of the complex sociocultural issues which beset the disorder.

Neurasthenia

Chronic fatigue-like illnesses were described as long ago as the eighteenth century, but the origins of CFS have generally been traced back to the end of the nineteenth century in a condition known as neurasthenia (Shorter 1993; Wessely 1990; White 1989). Neurasthenia was a term coined by an American neurologist, George Beard, to describe a condition of profound nervous exhaustion (Beard 1869). The illness was characterised by mental and physical fatigue which could be exacerbated on the slightest exertion. A French doctor in the 1880s explained how even simple activities such as standing, talking or walking were problematic for his patient:

Her head was continually heavy [alourdie], the only thing she wants is to remain in bed. Any activity causes her the greatest fatigue. In the months preceding my first visit she had renounced all activity, and normally did not leave her bed at all. She said that her illness had begun with a great sense of weariness in the head, followed almost immediately by great muscular fatigue.

(Cheron 1893 cited in Shorter 1994)

Recent doctors’ accounts of CFS are almost indistinguishable from such descriptions of neurasthenic patients. In his book The Body at War, John Dwyer (1988) provides a detailed account of Carol's battle with fatigue:

Her body was that of a very old woman she thought. It protested that it did not want to move; it was exhausted. More than that, it ached from head to toe. She could feel each muscle protesting even as she lay immobile in bed. Many of the muscles felt tender to her touch. With the maximum amount of will power she dragged her new self to the bathroom, then collapsed back on her bed, utterly exhausted from this effort. She had been tired before but never had she felt anything approaching this sensation. Her head was pounding and she recalls how confused she was.

(Dwyer 1988:192)

Like CFS, neurasthenia was associated with numerous other somatic complaints including headaches, general weakness, heart palpitations, gastrointestinal discomfort and muscle pain (Wessely 1990). As any form of exertion was seen to exacerbate the condition, rest was the advocated cure. In advising how to deal with neurasthenia it was stressed that ‘any unnecessary expenditure of energy, must be averted, any super-fluous task, any wasting of force’ (Hartenberg cited in Shorter 1992:226). This advice is not dissimilar to the ‘aggressive rest therapy’ frequently prescribed for CFS sufferers in self-help manuals.

The controversy raised by neurasthenia was remarkably similar to that of the 1980s’ ‘yuppie flu’ debate. Despite affirming that there were no physical signs of the disorder and that neurasthenia was compatible with the appearance of good health, Beard was adamant about the organic nature of the condition. He observed that the illness was most prevalent in the upper echelons of the community and concluded that neurasthenia was a physical response to the demands of industrialised society. In hisview, over-exertion resulted in loss of nerve strength from nerves losing their natural charge. However, as with modern-day CFS, not everyone wholeheartedly accepted neurasthenia as an organic disorder. Indeed, many neurasthenics complained that they were treated with indifference by the medical profession (Wessely 1990). Despite this early scepticism, neurasthenia acquired credibility as a neurological condition and was a popular diagnosis in the early part of the twentieth century not only in the US, but as far afield as Europe and East Asia (Ware and Kleinman 1992).

In fact neurasthenia became so popular for a while that it was used to describe almost any complaint that included subjective symptoms (Shorter 1992). However, the early part of the twentieth century brought about a new sophistication in psychiatric classification or nosology. With this came the realisation that many patients previously labelled as neurasthenic were suffering from any of a wide range of disorders. Henri Feuillade in 1924 described how under the label of neurasthenia ‘one finds melancholics, patients with compulsive thoughts [des scrupeleux], the anxious, the obsessed, the phobic, the impulsive, the degenerate, even some cases of neurosyphilis in remission’ (cited in Shorter 1992:231).

This increasing recognition of distinct psychiatric disorders, together with the advent of Freudian ideology and psychodynamic theories of emotion, meant that ideas about neurasthenia began to shift from neurology to psychology (Greenberg 1990; Wessely 1990). Physicians began to focus on the analysis of unconscious conflict in chronically fatigued patients. Chronic fatigue was seen as misdirected neurotic energy or the unconscious expression of underlying emotional conflict (Greenberg 1990). People with neurasthenic symptoms became known as neurotic or hysterical and neurasthenia as originally described by Beard was rarely diagnosed. Today, neurasthenia no longer appears in recent editions of the Diagnostic and Statistical Manual of Mental Disorders (DSM). While it is retained in the section on Mental and Behavioural Disorders in the tenth revision of the International Classification of Diseases (ICD-10), it is classified under ‘other neurotic disorders’ and is largely regarded as a ‘waste basket category’ that can result in the missed diagnosis of depression or other medical conditions (David and Wessely 1993; Lee 1994). Thus, until the reemergence of CFS as a unique disease of the 1980s, chronic fatigue became an ‘invisible’ diagnosis for the greater part of this century (Ware 1992).

War-related fatigue syndromes

Fatigue syndromes occurring during or after active combat also attracted attention at the turn of the century (Greenberg 1990; Hyams, Wignall and Roswell 1996). At the same time that ideas about neurasthenia were being formulated, another American physician described a very similar disease episode afflicting soldiers of the American Civil War, which he labelled ‘irritable heart’ (Da Costa 1871). The illness usually began with gastrointestinal upset followed by functional impairment aggravated by symptoms of exertional fatigue, disturbed sleep, dizziness, shortness of breath and sudden palpitations. Da Costa's emphasis on the last three symptoms suggests a substantial overlap with contemporary descriptions of panic and anxiety disorders. It is possible that some of the other symptoms reflected malnutrition, infections, stress or exhaustion. However, like neurasthenia, there were no consistent biological signs of disease and most irritable heart patients appeared to be in reasonable health. Da Costa believed the illness to be either of infectious origin or related to strenuous military duties. Treatment involved removal from active service and administration of a variety of tonics and medications for the heart (Demitrack and Abbey 1996).

A similar syndrome was common during World War I. This illness, referred to as the Da Costa syndrome, effort syndrome, and soldier's heart, incorporated most of the somatic symptoms described by Da Costa as well as a range of neuropsychological symptoms, such as forgetfulness and poor concentration (Greenberg 1990; Hyams et al.1996). In many cases the symptoms were deemed serious enough to evacuate soldiers back to England. Effort syndrome was initially attributed to cardiac hypertrophy caused by over-exertion, but as the war progressed the illness was linked to a number of causes, including a past history of nervousness or physical weakness, infections and exhaustion. Cardiac medication was found to be ineffective for these patients and attributing their illness to heart disease appeared to hinder recovery and return to the trenches (Hyams et al. 1996). However, structured rehabilitation programmes incorporating a gradual return to exercise were found to be effective. By the end of the war it became accepted that effort syndrome was not caused exclusively by wartime exposure, but whether the illness was primarily physiological or psychological in origin was still uncertain (Hyams et al.1996).

Effort syndrome remained a popular diagnosis at the beginning of World War II. However, attitudes towards the illness changed during the 1940s when Paul Wood, a distinguished British cardiologist, conducted a series of studies on a large group of patients with the syndrome in an attempt to discover whether the illness was primarily psychological or physical in nature. From this research, he concluded that premorbid and concurrent psychological factors were largely responsible for the generation of symptoms. He stated that ‘ patients should be informed of their illness, and treated as psychoneurotic; their distaste for this label may prove quite helpful ... The patient must be induced to believe he is suffering from the effects of emotional disturbance, and not from any disease or alteration of visceral function’ (Wood 1941).

It is not hard to comprehend why a diagnosis which then held these connotations would prove to be less popular with patients. The disdain for the diagnosis appears to be reflected in the Korean and Vietnam wars, where fatigue-like illnesses were not reported as major medical problems, and what might previously have been labelled effort syndrome or soldier's heart, became known as battle fatigue, acute combat stress reaction, or post-traumatic stress disorder (Hyams et al.1996).

Thus, fatigue-related war syndromes followed a similar path to neurasthenia. Faced with conditions that were more than likely multifactorial in nature, the medical profession chose to dispense with any evidence of physical disorder and to place the syndromes squarely in the psychiatric basket. As we will discuss in more detail in Chapter 3, this need to explain illnesses as either organic or psychiatric plagued much of the early research in CFS.

It is also notable that like neurasthenia, war-related fatigue syndromes have re-emerged in the past decade as the latest twentieth century disease: Gulf War syndrome. Gulf War syndrome was the label given to a series of symptoms reported by American, Canadian and British troops on returning home from the Persian Gulf war. These symptoms are almost identical to those of CFS and include fatigue, unrefreshing sleep, forgetfulness, headache, muscle pain, joint stiffness and sleep disturbance (Hyams et al. 1996). Large epidemiological studies have shown that when compared to other cohorts of soldiers, Gulf war soldiers certainly do report higher rates of symptoms and poorer health perceptions (Gray et al. 1999; Unwin et al. 1999). However, this appears to be a quantitative rather than a qualitative difference, as Gulf war soldiers’ symptom profiles do not appear to be different from those of other soldiers (Ismailet al.1999). No characteristic physical sign or laboratory abnormality has been linked to the syndrome (Grayet al.1999; Hyams 1998a). These findings suggest that, despite popular belief that the illness is an immune-related disorder resulting from multiple allergies or chemical sensitivities, it may not be a unique syndrome (Wessely 1997).

Epidemic outbreaks of fatigue-like illnesses

While the individual diagnosis of neurasthenia declined rapidly after World War I, at least twenty-three epidemic outbreaks of chronic fatigue-like illnesses occurred between 1934 and 1958, during the time of the polio epidemics (Henderson and Shelkov 1959). Outbreaks were reported in the United States, England, Iceland, Denmark, Germany, Australia, Greece and South Africa (Shafran 1991). The epidemics were reported under a variety of names including Royal Free disease, Icelandic disease, epidemic vegetative neuritis and acute infective encephalomyelitis (Shafran 1991). At the time of each epidemic, almost all the outbreaks were considered to be caused by some mysterious pathological agent reflected in both the British and American collective terms for the outbreaks – benign myalgic encephalomyelitis (Anonymous editorial 1956) and epidemic neuromyasthenia (Henderson and Shelkov 1959). In fact, myalgic encephalomyelitis or ME is still a popular term for CFS in many parts of the world and is retained in ICD-10 as a synonym for post-infectious fatigue syndrome (David and Wessely 1993). This is despite the fact that the striking feature of all the outbreaks was the stark contrast between the lack of laboratory findings and the intensity of the malaise and symptoms reported (Demitrack and Abbey 1996).

In 1970 a detailed analysis of the Royal Free epidemic and review of fifteen of the outbreaks concluded that these epidemics were psychosocial phenomena (McEvedy and Beard 1970a). Two causal mechanisms were proposed: mass psychogenic illness or altered perceptions of the medical community, or both. Psychogenic illnesses present as medical problems which are predominantly caused by psychological factors. Mass psychogenic illnesses commonly occur in closed communities, such as nurses’ homes and schools, and are characterised by the dramatic spread of a group of presenting symptoms (Skelton and Pennebaker 1982). The features of the Royal Free epidemic were used to support the mass psychogenic hypothesis (McEvedy and Beard 1970a). The spread of the Royal Free epidemic was explosive, starting off with fewer than five cases in mid-July and within two weeks escalating to a hundred cases. The hospital closed at the end of July and when it reopened three months later over three hundred patients had been affected. The presentation of symptoms commonly associated with psychogenic illness, such as loss of sensation in the hands and feet and over-breathing, provided additional support for the mass psychogenic hypothesis.

In a minority of the epidemics the spread of the illness was less sensational, leading McEvedy and Beard (1970b) to propose a different mechanism: altered medical perceptions. Here, suspected cases of polio triggered a scare of a polio epidemic. As further illness was expected, the community may have become overly sensitive to reports of symptoms in general, leading to cases of illness being documented that might otherwise have gone unreported. The symptoms were more variable and less dramatic than those reported during the Royal Free epidemic, ranging from fatigue to nausea and vomiting. These are all common symptoms which may not be reported to doctors in other social circumstances. The process of how oversensitivity or hypervigilance to symptoms can lead to increased reports of illness is discussed in detail in Chapter 5. Such situations probably represented pseudo-epidemics, where the rates of illness are normal but are perceived to be exceptionally high. Interestingly, a recent investigation which compared employees at two state offices which had reported an outbreak of fatiguing illness with an office of employees which had not reported an outbreak, found equivalent levels of fatigue symptoms in all three offices (Shefer et al.1997). These results lend support to the idea that certain outbreaks of fatigue-like illnesses are an artiefact of hypervigilance to symptom reporting, rather than a true reflection of an unknown disease.

Not everyone agreed with McEvedy and Beard's conceptualisations and a more recent review of the outbreaks suggested that the aetiology of these outbreaks was more heterogeneous than previously reported. In this review Briggs and Levine (1994) suggested that although excessive fatigue, myalgia, headache and low grade fever were common to all epidemics, there were marked differences in the reporting of neuropsychological symptoms, lending support to the notion that multiple aetiological agents were responsible for the outbreaks.

With the demise of the polio epidemics, and possibly influenced in part by the suggestion of mass psychogenic illness, few epidemics of chronic fatigue have been reported since the 1960s. In 1984, however, an outbreak of chronic fatigue was reported in New Zealand in the small rural town of Tapanui (Poore, Snow and Paul 1984). The commonly experienced symptoms were tiredness, mood and sleep disturbances, ...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Figures and tables
• Series editor's preface
• Chapter 1: Chronic fatigue syndrome
• Chapter 2: Contemporary chronic fatigue syndrome
• Chapter 3: Chronic fatigue syndrome as a biomedical illness
• Chapter 4: Psychiatric illness and the social context of chronic fatigue syndrome
• Chapter 5: Making sense of symptoms in chronic fatigue syndrome
• Chapter 6: Illness representations and chronic fatigue syndrome
• Chapter 7: Coping in chronic fatigue syndrome
• References