European Child & Adolescent Psychiatry [Suppl 1] 12:2024 (2003) DOI 10.

1007/s00787-003-1103-y

Pierre J. V. Beumont Stephen W. Touyz

What kind of illness is anorexia nervosa?

s Abstract With the best will in the world, it is difficult not to become disillusioned with the diagProf. Dr. Pierre J. V. Beumont Dept. of Psychological Medicine Royal Prince Alfred Hospital University of Sydney Sydney 2006, Australia Prof. Dr. Stephen W. Touyz () Dept. of Psychology University of Sydney Sydney 2006, Australia

nostic system for eating disorders. Although repeatedly revised, diagnostic criteria such as those of DSM-IV or ICD10 are inadequate to describe the patients condition. This essay critically appraises the historical development of eating disorders and challenges the widely held notion that bulimia nervosa and anorexia nervosa share a common psychopathology. It further argues that the time has

arrived to think about anorexia nervosa and the eating disorders in a way different to the current stereotyping. It suggests that anorexia nervosa like neoplasia is a disease that requires staging and a model for such staging is presented. s Key words anorexia nervosa bulimia nervosa staging disordered eating diagnosis

Eating disorders are a series of syndromes involving disordered eating that have been described in recent years. The stages of an illness are definite periods in its development that are marked by specific groups of symptoms. Anorexia nervosa is a mental and physical disease that was recognised in France in the 19th century, usurped for England by Queen Victorias physician,and subsequently adopted by many thousands of Americans [7].According to the prevailing grand narratives embodied in DSM-IV [4] and ICD-10 [36] it is merely part of the spectrum of eating disorders. This categorisation not only distorts our view of the illness, but also trivialises its seriousness. In fact, in the developed countries of Europe, North America, Japan, Singapore, Australia and New Zealand, anorexia nervosa is now one of the most serious chronic diseases of adolescent girls and young women. This is a big claim to make, but it can be justified. How does one assess the seriousness of a disease? Its prevalence, mortality, chronicity, effect on the sufferers life, on the family, and on society in general, must all be considered. On each of these measures anorexia nervosa is very severe. Rare when compared with major public health problems such as obesity, hypertension or substance abuse, anorexia is common among serious chronic illnesses. Its point prevalence for girls aged 15 to

19 is 0.5 %, and about half as much for women aged 20 to 24 [26]. In these groups it is 10 times as common as IDDM. The lifetime risk of a woman developing anorexia nervosa is half that of schizophrenia. Its mortality rate on a number of follow-up studies over 20 years is about 20 % [37], completely unacceptable for a disease whose onset is usually in adolescence. Its overall mortality rate is 5 times that of the same aged population in general, with deaths from natural causes (cardiac arrhythmia, infection, starvation) being 4 times greater, and death from unnatural causes 17 times greater than expected [21]. The risk of successful suicide is 32 times that expected, compared with major depression in which deaths from suicide are 21 times greater than expected. The average duration of illness is 7 years, and even those who eventually recover are unlikely to fully return to normal health. Persistent physical abnormalities including osteoporosis and anovulation, psychiatric difficulties such as chronic dysthymia and obsessive compulsive symptoms, and social problems such as isolation and failure to establish autonomy, are common. Many patients become chronic, with a degree of social handicap as great as that of schizophrenia. The burden anorexia nervosa places on the community is high [27], and its load on hospital services considerable [12].

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Recognition of anorexia nervosa as an illness entity came from the need to differentiate various forms of severe wasting diseases from each other. Mortons Phthisiologica: or a Treatise on Consumption (1689), one of the first systematic monographs on tubercular disease, also contained information about a nervous consumption that we now recognise as anorexia nervosa. One hundred and fifty years later the psychiatric nature of this condition was adequately acknowledged, and the papers of Marce, Lasgue, Gull and Janet in the late 19th century [7] describe patients whose clinical presentation more closely resembles those of their present-day counterparts than do Charcots hysterics or Kraepelins schizophrenics. But unlike most psychiatric illnesses, anorexia nervosa is a diagnosis that is necessary to medicine even if there were no discipline of psychiatry. Modern physical medicine could continue unaffected if most psychiatric illnesses were denied medical status, functional psychoses considered as possession by demons, and neuroses seen to be the result of faulty learning. However, the diagnosis of anorexia nervosa would have to be preserved in order to encompass those extremely ill, emaciated patients in whom no specific causative organ pathology can be found. The medical and for that matter the psychiatric specificity of anorexia nervosa has been overlooked as it has been forced, as if by Procrustes, into the mould of disordered eating and eating disorders over the last half century. During this period, disordered eating has become a matter of great medical concern. For the first time in history, over-nutrition has become as common and important as under-nutrition in many parts of the world. The resulting abdominal obesity is a very major public health problem, leading to significant physical morbidity and attracting much medical and social opprobrium, but usually associated with little psychological distress. Its clinical manifestations are so diffuse, its course so varied, and its aetiology so diverse, that even the American Psychiatric Association has stopped short of calling it a psychiatric illness. On the other hand, a series of syndromes in which disordered eating is prominent has been labelled the eating disorders. Eating in these disorders may be extraordinary,or excessive, or too restrictive or alternate between patterns. Hence the term dieting disorder is sometimes more appropriate than eating disorder. Some of these patients are overweight, but often the excess adipose tissue is on the thighs and buttocks, and carries far less physical risk than abdominal obesity. Others are in the normal weight range, or only slightly over- or underweight. Eating in pica and rumination is bizarre. These are specific behavioural patterns found usually in young children, the intellectually disabled, or occasionally in otherwise normal adults. ED NOS (eating disorder not otherwise specified) refers to a mixed group of patients, some with symptoms of bulimia or anorexia nervosa

that do not reach criteria for the diagnoses, others with disordered eating secondary to other psychiatric illnesses such as depression, hypochondriasis or delusional states. It is clear what the not otherwise specified indicates, but not why they are eating disorders rather than just disordered eating. Although they refer to discernible patterns of behaviour and hence are proposed as clinical syndromes, these conditions fall short of being true clinical entities in that they do not indicate a consistent pathology, or even psychopathology. The decision to include pica as a diagnosis in DSM-IV but exclude psychogenic polydipsia, for example, is arbitrary. Each refers to a form of behaviour, neither to a common psychopathology, and in fact the consequences of polydipsia are more likely to be medically serious than those of pica. Thus some eating disorders diagnoses refer merely to instances of unusual (or even abnormal) behaviour that may have detrimental physical and psychological effects. Their status is similar to the behavioural abnormality of the cigarette smoker en route to chronic bronchitis, emphysema or carcinoma. They are matters of health concern; it is not helpful to consider them as if they were clinical entities. Binge eating disorder refers to a characteristic pattern of episodic overeating which patients experience as being out of their control, but which is not followed by any compensatory behaviours to get rid of the excess energy intake. It has a recognisable psychopathology [35]. Binge eating disorder patients hold disparaging views of themselves, and show a greater than normal concern with issues of weight and shape. They may describe their behavioural disturbance as comfort eating, resulting from prior psychological trauma, and they show much associated psychopathology. Binge eating disorder is the most common of the eating disorders. Although there is controversy about appropriate treatment, fortunately the condition often remits spontaneously [16]. Bulimia nervosa is the best known member of the eating or dieting disorders group. Bulimia simply means gorging or eating like an ox. It has been recorded since classical times, but was not considered part of a clinical entity until Russells seminal paper in 1979 [32]. Russell linked this episodic behavioural disturbance with phases of intermittent starvation, compensatory behaviours particularly vomiting and purging, an intense desire to be slender, and a preoccupation with eating and weight control, to create a new syndrome. The clarity of its definition, the consistency of its manifestations, and its documented response to treatment, led to its general acceptance as an illness. Habermas [19] has argued convincingly that it is a socially determined illness, the result of a process of social causation and labelling. Unlike anorexia nervosa it is a modern condition, not accorded illness status by previous generations. It is perhaps best considered as the result of a dilemma facing young women [6]. They have a choice between restricted eating

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so as to attain a degree of slenderness that is equated with beauty by our society, or succumbing to the easily accessible,high energy foods that they are constantly enticed to eat, and subsequently having a normal or even a plump body shape. The dilemma is resolved by gorging, attempting to get rid of the calories by vomiting or purgation, and then starving until the next episode of bulimia occurs. Once this behavioural pattern was labelled an illness, it spread rapidly through the vulnerable section of the community. It soon achieved status and became a means of coping with unrelated stressful situations, such as an unhappy marriage or the traumatic memories of childhood sexual abuse. These features are shown in the recent history of bulimia nervosa as a medical condition. In the 1970s, patients rarely presented for treatment. When they did so, they expressed shame about their behaviour and believed themselves to be unique in displaying it [1]. By the year 2002 they have become extremely common (a prevalence among young women of 36 %), well aware of their diagnosis, assertive in their claim to treatment, and convinced that their disturbance is psychiatric rather than just behavioural. Whether or not bulimia nervosa is an iatrogenic condition, it is clearly neither a variant of anorexia nervosa nor particularly ominous, as was originally claimed. Serious physical complications are rare. Depressed mood is common, but suicidal behaviour is usually associated with impulsivity and substance abuse. Various treatments have been found to be effective [3, 11]. Its natural course [16] is less severe than that of anorexia nervosa. Despite the assertion in the earlier papers that bulimia nervosa arises on a background of prior anorexia nervosa, careful follow-up studies show that few genuine anorexia nervosa patients go on to develop it. Thus none of the 84 patients followed for 20 years by Zipfel et al. [22] developed bulimia nervosa, and in only 14 of the 100 patients studied by Ben-Tovim and colleagues [5], and 4 of our own series of 49 patients [18], followed for 6 to 11 years, did this occur. Perhaps the confusion arose because bulimia nervosa patients may talk of having been previously anorexic. By that they usually mean that they had previously attempted to restrict their eating, not that they had fulfilled the diagnostic criteria of the latter condition. They may have lost weight, but they have not gone through a stage of emaciation. At worst, they had incipient anorexia nervosa. Hence too, the frequent reports in studies of bulimia nervosa of a high proportion who were prior anorexics. The advent of bulimia nervosa as a psychiatric diagnosis has had a deleterious effect on patients with anorexia nervosa. Because it is an easier and more rewarding condition to treat, attention and research has been directed to it rather than to anorexia. Because purging figured prominently in its original description it has been confused with the vomiting and purging form of anorexia nervosa [10], which really is an ominous

variant of the disease. Purging behaviours in malnourished patients are frequently fatal, but are less dangerous in normal-weight bulimics. The claim that bulimia and anorexia nervosa share a common core psychopathology is misleading. Their attitudes, behavioural abnormalities and associated cognitions are similar, but not their psychopathologies, in the Jasperian sense of that term. Those who claim a commonality of psychopathology are focusing on the content rather than the form of the mental state. While both anorexic and bulimic patients accord an unduly high salience to weight and shape, are preoccupied with eating and not eating, relate their low self esteem to their view of their own bodies, and tend either to deny their thinness or overestimate their size [8], none of these features is unique to these illnesses. They certainly feature in binge eating disorder. Many healthy young women not all of whom are plump have essentially similar cognitions, and what distinguishes bulimia and anorexia nervosa is their intensity, not their quality. However, in bulimia nervosa these concerns are the essence of the disorder. The bulimic patient seeks slenderness, but wants it in order to be healthy and happy. She is often self-deprecating, but this is because she is bulimic, not the reason for it. She maintains that if only she could stop the abnormal behaviour and retain a slender figure she would be content [14]. It may be foolish, but it is not irrational. In the anorexia nervosa patient, such reasoning occurs only in the early phase of the disease. Once fully established, anorexic cognitions are largely replaced by more grotesque beliefs. Patients are not worthy of eating, they dont deserve any form of gratification, they must punish themselves by unrelenting exercise, they are not like other people, and what is acceptable in others in terms of weight, shape and behaviour is not acceptable in them. If they let up on their anorexic behaviours, they are filled with self-loathing and guilt. Being emaciated is a goal in itself, not a means of achieving happiness. Work is an obsession, driven by a fear of failure rather than the hope of success. It is not that they are closed to reason about their physical condition, but rather that it is irrelevant because the sole purpose of their lives is their illness. The extent of their divorce from the reality that most of us recognise is so great that they are incapable of being responsible for their decisions in relation to their illness [30]. Diagnoses are no more than tools used by clinicians to group the ailments these patients present for purposes of discovering their cause,discerning their pathology, determining their treatment, and predicting their outcome. Despite the assertions of over-confident nosologists, they are not a way to carve Nature at her joints. The pathogen itself may be a real entity, such as a neuro-organism or an abnormal enzyme, but the disease is always an interaction between pathogen and host. It warrants attention only in that it serves a clinical

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purpose [23]. Like the animals in Orwells Animal Farm, some diagnoses, particularly psychiatric diagnoses in DSM-IV and ICD-10,are more equalthan others. A diagnosis of schizophrenia or obsessive-compulsive disorder conveys a different order of concept than does stuttering, frotteurism, or primary insomnia. And so it is with eating disorders. Binge eating disorder and bulimia nervosa denote syndromes of behaviours, attitudes and cognitions that are consistently related to each other. They are major causes of psychological distress, but may well be socially determined as illnesses of our time. In contrast, anorexia nervosa was a useful diagnosis long before there was a medical concept of eating disorders. It has variously been attributed to a pituitary or hypothalamic lesion, a form of schizophrenia, an affective disorder, or an overwhelming fear of oral impregnation [7]. Current workers are impressed by an apparent similarity with the psychopathology of obsessive-compulsive disorder, a feature that was noted by Janet and emphasised by Australian authors in the 1930s [29]. Recent work on the familial aggregation and possible genetic basis of the disease suggests that this association may be mediated via serotoninergic dysfunction [33], and raises the question of what really are the phenotypes of eating disorders [20]. Is anorexia nervosa a neuro-psychological rather than a psychogenic disease [13]? Is treatment by psychotropic medications indicated [24]? Current thinking about all eating disorders is dominated by a cognitive theory that links them together. However, the focus of attention on weight and shape issues in anorexia nervosa is relatively recent. Neither fat phobia [25, 31] nor distorted body image [15] has been sustained as an essential feature of the illness. It is likely that most anorexia nervosa patients nowadays are drawn into the illness by the same sort of societal pressures that are responsible for bulimia nervosa. However, in the past a more common route may have been a desire to suppress sexuality [7], and psycho-sexual difficulties remain a major feature of the illness [9]. Whatever the origin, it appears that once it is established, anorexia nervosa becomes a self-perpetuating illness. Even healthy volunteers, when submitted to prolonged semi-starvation, develop many of its characteristic psychological and physical manifestations, as was shown in the classic Keys experiment. Anorexia nervosa can be diagnosed only when it has become moderately severe. As with the DSM-IV criteria for schizophrenia, the diagnosis of anorexia nervosa has an intrinsic criterion of duration, albeit not specifically stated. In order to bring about emaciation to the criterion level, the behavioural disturbance must have been present for some time. Because of our diagnostic criteria, there is no way to make an early diagnosis. There must be incipient cases, and their early identification and treatment are likely to be important. But at present

these patients are indistinguishable from those of their peers who diet restrictively, exercise excessively, or even use unhealthy behaviours such as vomiting and purging to control weight [2]. At best, the incipient anorexic is given a diagnosis of ED NOS. As with depression [29], it is time to think about anorexia nervosa and the eating disorders in a way different to the current stereotyping. Diagnostic criteria such as those of DSM-IV or ICD-10 are inadequate to describe the patients clinical condition. Like neoplasia, anorexia nervosa is a disease that requires staging. These stages should be defined in terms of severity (of the nutritional disturbance, medical manifestations, psychopathology, behavioural abnormality and psychosocial function) and also, because it is a chronic disease, of duration: acute episode, partial or complete remission, partial or complete relapse, and final outcome (recovery, fatality, chronicity or residual). At one extreme, anorexic thoughts and behaviour merge with those of the peer population. When the current diagnostic criteria are met, the patient has a recognisable illness but is not particularly ill. Most, but not all, ascribe their problem to the sort of dysfunctional cognitions that are held also by patients with bulimia nervosa. In this they differ from the seriously ill patients who were described in the earlier literature, among whom a fear of fatness was seldom articulated. As the illness progresses, however, the reason for their behaviour becomes less clear. Eventually, it reaches a stage at which the physical effects of emaciation and the behaviours used to induce it are such as to cause severe physical morbidity and threaten life. The psychiatric presentation also changes, so that anorexic cognitions are replaced by the same profound mental disturbances that impressed earlier generations of clinicians. These disturbances are not simply the effect of an induced organic mental state, in that they have other distinctive features suggestive of obsessionality and paranoid thinking (i. e., that one is qualitatively different from other people). At what exact point this transition occurs is unclear, but perhaps emaciation beyond a BMI of 14 or 15 is the critical differential. Perhaps all patients in the earlier stages of anorexia nervosa have the potential to develop this more serious form of illness, or perhaps there are only some who have this vulnerability. In either case, it is these severely ill patients who were the subject of the original description of the illness. To consider them as forming part of a spectrum of eating disorder is as profitless as thinking of patients with chronic bronchitis and emphysema as forming part of a spectrum with allergic rhinitis and the common cold. To expect them to respond to cognitive therapy in the same way as patients with bulimia nervosa is excessively optimistic, even if that cognitive therapy is specially modified so as to respect the patients set of values [34], or to be directed at issues of control rather than eating [17].

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