Coping and illness cognitions

Clinical Psychology Review, Vol. 21, No. 2, pp. 161–182, 2001 Copyright © 2001 Elsevier Science Ltd. Printed in the USA. All rights reserved 0272-7358/01/$–see front matter

PII S0272-7358(99)00031-8

COPING AND ILLNESS COGNITIONS: CHRONIC FATIGUE SYNDROME Susanne Ax Liverpool John Moores University

Vernon H. Gregg and David Jones University of London

ABSTRACT. The chronic fatigue syndrome (CFS) is described, and research on coping with this illness reviewed and analysed. CFS is a severely disabling illness of unknown etiology, which has occurred in epidemic forms all over the world. However, the number of sufferers has dramatically increased over previous years. The heterogeneous symptomatology of CFS was reviewed, and diagnostic criteria were discussed. The difficulty in establishing causality was emphasized. An interaction of factors appears most likely to be associated with illness onset and maintenance. As the mediating factor could be sufferers’ coping behavior, the existing coping literature was reviewed. There might be an association between coping and physical and psychological well-being. Finally, recommendations are made for longitudinal research on coping and coping effectiveness, and for the development of therapeutic interventions. © 2001 Elsevier Science Ltd. KEY WORDS. Chronic fatigue syndrome, Coping, Cognition, Therapy, Carer. THE CHRONIC FATIGUE syndrome (CFS) is a disabling condition of unknown etiology and prognosis. Parallel to an apparent increase in the number of sufferers over the past decade (currently there are half a million diagnosed sufferers in the United States; Friedberg & Jason, 1998), CFS has received increasing attention in the scientific literature. Most studies have been concerned with researching possible causes and treatment of the main symptom, fatigue.

Correspondence should be addressed to Susanne Ax, Leddinstr. 28C, 21614 Buxtehude, Germany. E-mail: [email protected]

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THE IMPORTANCE OF COPING WITH CFS Research into interventions to increase psychological well-being has been rare, as most cognitive-behavioral interventions are aimed at increasing physical functioning. It is argued here that greater attention should be paid to the patient’s emotional and psychological state. This could be achieved by focusing on the patient’s coping behavior. In accordance with this, the literature on coping with CFS was reviewed. It has been recognized that literature reviews are often influenced by the authors’ discipline (Joyce, Rabe-Hesketh, & Wessely, 1998). In this case of CFS, researchers frequently belong to areas of, for example, psychology, psychiatry, and immunology, and so an additional aim was to overcome this problem by reviewing the literature from a multidisciplinary perspective. CFS has been called the “disease of a thousand names” (Bell, 1991). It has been referred to as myalgic encephalomyelitis (ME), postviral fatigue syndrome (PVFS), chronic fatigue immune dysfunction syndrome (CFIDS), and yuppie flu, to name a few. The variety of names stems from the fact that the etiology of CFS is not known. Some people have argued that CFS is an umbrella term and therefore that ME, PVFS, and other conditions are really subclasses of CFS (Jason et al., 1995). The diagnoses of CFS, ME, and PVFS are variously given by physicians, but there is insufficient evidence supporting the existence of such subclasses, and therefore physicians’ and researchers’ use of CFS to embrace the various symptoms will be adopted here. While names such as ME or PVFS imply specific causes, CFS only points to the most prominent symptom, fatigue. Reports suggest the CFS affects predominantly young (20- to 50-year-old) White women (Fuhrer & Wessely, 1995; Fuller & Morrison, 1998; Hilgers, Krueger, Lembke, & Ramon, 1991; Kroenke, Wood, Magelsdorff, Meier, & Powell, 1988), many of whom are working in highly demanding jobs before the onset of the illness. This led to the assumption by some physicians that the so-called yuppies, young and successful professionals, and especially women struggling with work and family responsibilities, had finally succumbed to stress (Ho-Yen, 1990). Such suggestions implied that CFS was a product of the stressful Western way of living. However, these assumptions are being challenged now as men, children, and generally people of all ages and who do not report extreme stress prior to the onset of CFS, also appear to be affected (Shepherd, 1992). For instance Bell (1991) suggests that up to 30% of reported cases are children (although there are only few cases under the age of 5). Nevertheless, it appears that overall about 75% of reported cases are adult white females (Bell, 1991; Showalter, 1997; Wessely & Sharpe, 1995). Similar figures are often reflected in study samples. For example, Lewis, Cooper, and Bennett (1994) obtained a sample of 23% males and 77% females, while Ray, Jefferies, and Weir (1995) obtained a female sample of 68%. It must be emphasized that the greater number of females diagnosed with CFS might be related to increased symptom reporting in females and stigma (Lewis & Wessely, 1992). Nevertheless, such figures underline the difficulty associated with recruiting male patients or those from ethnic minorities (an exception is Buchwald et al., 1995). The illness gained widespread recognition only in the last decade when the number of cases increased for no apparent reason. However, some experts argue that it has existed before. For example, Bell (1991) has pointed out that CFS has occurred in epidemic and endemic forms in at least 50 recorded outbreaks all over the world. It is now recognized that previous outbreaks of CFS occurred in the United States (e.g., Gilliam, 1938), New Zealand (e.g., Poore, 1984), Iceland (e.g., Sigurdsson, 1950) and Britain (e.g., Medical Staff of the Royal Free Hospital, 1957). The most severe of these

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outbreaks appeared to be the epidemic in Iceland in 1950, which presented 1,100 cases in 2 years. Bell (1991) has emphasized the likelihood of an infectious cause for an illness of such epidemic proportions. However, Showalter (1997) argues that outbreaks of hysteria, such as CFS, can have epidemic proportions as they connect with modern social movements. She suggests that infectious diseases are spread by ecological change, human interaction, and so forth, while infectious epidemics of hysteria are spread by stories in the media, whether newspapers or television. So, the epidemic increase in the reports of CFS-related symptoms and its diagnosis remains obscure. CFS is characterized by physical symptoms such as extreme fatigue without exertion, muscle pain, enlarged lymph nodes, chest pain, headaches, noise and light sensitivity, and more. Cognitive symptoms include memory and concentration difficulties or speech problems. In addition, sufferers often experience psychological symptoms such as depression or mood fluctuations (Bell, 1991; Macintyre, 1992; Wessely, 1992). Symptoms differ between sufferers, as well as within people across single days (Wood, 1987). This lack of consistent symptomatology together with any agreed etiology make the diagnosis of CFS difficult. The Centers for Disease Control (CDC; Holmes et al. 1988) proposed in 1988 a set of diagnostic criteria for research into CFS, namely: (1) exclusion of other illnesses (with similar physical symptoms or psychiatric conditions) by evaluation based on history, physical examination, and laboratory findings; (2) new onset of debilitating fatigue that does not resolve with bed rest and with reduced activity level to below 50% of the patient’s premorbid activity level; (3) the presence of six symptoms such as fever, sore throat, painful lymph nodes, muscle weakness, and others for at least 6 months; and (4) the presence of at least two physical criteria such as lowgrade fever, nonexudative pharyngitis, and tender cervical or axillary lymph nodes. If no physical criteria are present, eight or more symptoms are required for diagnosis. These criteria were initially recommended and widely accepted by researchers as well as physicians. However, they were also criticized for a number of reasons, including the exclusion of all psychiatric conditions, such as depression, and because a large number of symptoms had to be present for a diagnosis of CFS (Price, North, Wessely, & Fraser, 1992). So, the criteria excluded a large number of people with psychiatric disorders, such as depression and anxiety, which have been proposed by some to be secondary to CFS (Bates et al., 1994). Alternative criteria were consequently developed which were less restrictive (in Britain: Sharpe et al., 1991; in Australia: Lloyd, Wakefield, Boughton, & Boyer, 1988). Recently, new criteria have also been defined by the CDC (Fukuda et al., 1994), which require the following: presence of persistent or relapsing fatigue which is new or definite but unexplained, and that lasts 6 or more months, and four out of a range of symptoms such as cognitive impairments, sore throat, muscle pain, or tender lymph nodes, which have been present for at least 6 months but do not predate the fatigue. In addition, the criteria require the exclusion of any medical condition that might lead to chronic fatigue, the exclusion of any past or current major depressive disorder, alcohol or other substance abuse within 2 years before the onset of chronic fatigue, and the exclusion of severe obesity. Thus, the criteria defined by Holmes et al. (1988) and Fukuda et al. (1994) differ in the number of required symptoms, which have been reduced in the new set of criteria, and in the definition of fatigue, which must now have a new or definite onset. The new criteria therefore allow the inclusion of a wider range of conditions which may cause persistent fatigue (Bates et al., 1994). The new CDC criteria are still somewhat more restrictive than the British and Australian criteria, and differ in respect to requirements of fatigue severity, type of fatigue, neuropsychiatric symptoms, and other minor criteria (Bates et al., 1994; Jason

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et al., 1997). However, all three exclude patients with medical conditions associated with fatigue and major psychiatric disorders (Bates et al., 1994). A problem has emerged in that physicians employ different diagnostic criteria, for example, U.S. doctors generally use the CDC criteria, while British doctors use the Oxford ones. Therefore, patients presenting with a different symptomatology are given the same diagnosis, and this can have an impact not only on treatment, but also on the conclusions drawn from research.

Etiology and Chronicity As mentioned previously, the etiology of CFS is unknown. About 75% of sufferers report an acute onset of symptoms (Bell, 1991), while the others describe a rather gradual increase in the number and intensity of symptoms. Those who report an acute onset often cite a flu-like infection, often on holiday abroad; or acute stress (e.g., bereavement). Some of those with gradual onset report being overworked and difficulties within the family, but others stress an active, healthy, problem-free life. Such reports are retrospective and are thus likely to be influenced by personal beliefs and memory effects (Ax, Gregg, & Jones, 1998). It is possible that the extreme embellishment of past life is a way of coping with loss rather than a reflection of true events. The course of the illness also varies. While 30% of patients experience a steady course (Bell, 1991), others report fluctuating periods of relapse and remission. The uncertainty that this causes in sufferers is compounded by the fact that the duration of the illness varies. While the average illness duration is 3.5 years (with a mean age at onset of 27; Bell, 1991), some people seem to recover after only a year, and other report to have been ill for 20 to 30 years (Ax et al., 1998). However, the latter only received a diagnosis in the last 10 years, and so it is not clear whether earlier symptoms were part of the syndrome. It is noteworthy that many of these long-term sufferers have received past diagnoses of depression. However, several reports suggest that there is no correlation between illness duration and psychological well-being (Ray et al., 1995; Wilson et al., 1994). Some authors make predictions for prognosis or recovery. For example, Ho-Yen (1990) suggested that in patients under 30 years of age, the illness is less likely to be chronic than in sufferers over 50. Macintyre (1992) suggested that 60% of people recover within 5 years, and 90% of people within 10 years. She also suggested that only very few people recover 100%. Some of these statistics, however, presented without the appropriate research background, can be very damaging to patients. Overall, it appears that CFS is not a lifelong illness, and the only deaths reported have been by suicide. Several etiological theories, involving viral and/or immunological factors, have been proposed for CFS. For instance, there have been different opinions concerning whether an infection is central or peripheral, and whether that infection is chronic or merely the trigger of the illness. Some theories that involve a peripheral infection point towards resulting metabolic myopathy (e.g., Behan, More, & Behan, 1991; Jamal & Hansen, 1985), but there is not extensive support for this as CFS patients appear to have normal muscle strength, endurance and fatiguability (Edwards, Gibson, Clague, & Helliwell, 1993). Also, these studies were mostly conducted with patients diagnosed on the basis of the old CDC criteria (Holmes et al., 1988) and therefore included patients presenting fatigue of unspecific onset, and so it is not clear whether any disability is due to inactivity and muscle wasting.

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Most research now points to central nervous system involvement (Demitrack, 1994). It has been proposed that an initial viral infection could lead to immune system dysfunction, which in turn causes symptoms typical of CFS (Bell, 1991; Sharpe, 1993). Those viruses associated with initial or persistent infection have included the EpsteinBarr virus, Coxsackie virus, candida albicans, HHV-6, HTLV-2, and others (Jason et al., 1995). The Epstein-Barr virus is now discarded as it has been shown that 95% of the population presents antibodies to this virus. In any case, patients often show increased antibodies albeit to different viruses. At least two theories have been developed to explain this phenomenon. For instance, several researchers point to an abnormally increased immune functioning rather than to one specific virus as the cause of the illness (Jason, 1993). CFS could thus be a failure to “down-regulate” the immune system, in which cytokines continuously attack viral agents and in this way produce fatigue and muscle pain. Alternatively, it may be that infectious agents damage the immune system of genetically vulnerable people. Other viruses, which normally are controlled, then replicate. Yet another theory has been developed by Demitrack (1994), who has suggested that an endocrine disorder affecting the hypothalamicpituitary-adrenal axis causes chronic fatigue. This is an interesting proposition which requires further investigation. Other researchers point to environmental stressors such as pollution or organophosphates (Jason et al., 1995). While this could explain the often concurrent allergies reported by sufferers and is frequently promoted by popular authors (e.g., Macintyre, 1992), there has been no firm scientific evidence for it so far. In general, there is insufficient evidence suggesting that CFS might be caused by single viral, immunological, or environmental agents. While this could be a consequence of the methods employed and the difficulty of establishing causality with cross-sectional research, psychological and social factors might also play a role in the etiology of CFS. For instance, some researchers have proposed that CFS affects women who are unable to cope with the burden of occupational, family, and social responsibilities which have arisen in this century (Abbey & Garfinkel, 1990). CFS, then, offers them the possibility to escape from their obligations and receive greater support (Friedberg, 1996). As mentioned earlier, males and children appear to be affected by CFS, so this model has been subject to criticism by both patients and health professionals. Other researchers point to depression as a primary disorder, or to CFS as a psychosomatic condition (Katon & Walker, 1993; Lane, Manu, & Matthews, 1991). Research has shown a predisposition among CFS sufferers to develop depression, with a reported prevalence of depression before the onset of CFS being twice as great as for controls (Straus et al., 1988). While estimates of depression or general psychiatric comorbidity vary somewhat, they indicate a prevalence of depression of 50 to 60%. For instance, David, Pelosi, and Wessely (1991) have suggested that 50% of CFS patients suffer from depression, while 25% suffer from anxiety, somatization, or phobia. According to Bell (1991), 60% of CFS patients are depressed. Also, in some studies CFS suffers presented a greater incidence of personality types which have been associated with depression, such as type A personality and neuroticism (Blakely et al., 1991; Lewis, Cooper, & Bennett, 1994). This has led some researchers (e.g., Wessely & Sharpe, 1995) to argue that CFS is a functional somatic disorder. Prevalence statistics for depression in CFS are presented in Table 1. Antidepressive treatment for CFS differs in medical practice, and suggests that different drugs might work for different people. The effect of antidepressive medication is, however, compounded by many patients’ resistance to or suspicion of such treat-

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TABLE 1. Prevalence of Depression in Chronic Fatigue Syndrome (CFS)

Study Taerk et al. (1987)

Sample Size 24

Kroenke, Wood, Mangelsdorff, Meier, & Powell (1988)

102

Manu, Matthews, & Lane (1988)

135

Wessely & Powell (1989)

47

Wood, Bentall, Göpfert, & Edwards (1991)

33

Friedberg & Krupp (1994) Terman, Levine, & Doherty (1998)

22 110

Assessment Diagnostic Interview Schedule Beck Depression Inventory Beck Depression Inventory Modified Somatic Perceptions Questionnaire Milton Health Behavioral Inventory Diagnostic Inverview Schedule

Schedule for Affective Disorder and Schizophrenia General Hospital Questionnaire Hospital Anxiety and Depression Scale Hospital Anxiety and Depression Scale Spielberger’s State Trait Anxiety Inventory Past psychiatric history

Center for Epidemiological Studies Depression Scale Personal Inventory for Depression and Seasonal Affective Disorder Systematic Assessment for Treatment Emergent Effects

Depression (and Other Psychiatric disorders) Depression: 67% Depression: 56%

Depression: 50% Somatization disorder: 14% Panic disorder: 8% Dysthymia: 6% Depression: 47% Somatization disorder: 15%

Depression: 23.5% Phobic anxiety state: 11.8% Anxiety state: 5.9% Somatization disorder: 5.9% Subcases of anxiety and depression: 26.5% Depression: 46% Depression: 52% Anxiety: 51%

Note. This table presents a selection of studies assessing the prevalence of depression in CFS. It shows the names of authors, number of participants diagnosed with CFS, assessment instrument, and diagnosis of depression and/or other diagnoses in the past 10 years.

ment, and many report no beneficial effects. In order to assess the effectiveness of antidepressive treatment in CFS, Gruber, Hudson, and Pope (1996) conducted a literature search of randomized, placebo-controlled clinical trials where antidepressive medication was used. They concluded that such agents can be partially effective in reducing depressive symptomatology, and thus suggested a relationship between CFS and depression. Similar conclusions were drawn by Thompson et al. (1998) in a study using selective serotonin reuptake inhibitors and tricyclic antidepressants. While Goodnick (1996) failed to find a beneficial effect with selective serotonin reuptake in-

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hibitors, he obtained positive results with venlafaxine. However, Natelson et al. (1998) found that while selegiline lead to improvement in tension/anxiety, vigor, and sexual relations, the drug had no antidepressive effect. In addition, Deale, Chalder, and Wessely (1998) have found that fluoxetine has no effect in combination with graded exercise, while the latter had little effect. Overall, these studies suggest that antidepressants have no effect on fatigue, but can be beneficial in the treatment of depressive symptomatology. The lack of a reduction in fatigue underlines the possible distinction between CFS and primary depression. At present, however, the existence of depression as a primary or secondary symptom remains uncertain. CFS usually has severe consequences beyond disability and physical complaints, and so depression or other forms of mental illness could be secondary. For instance, many sufferers experience interpersonal problems (e.g., with their families and partners), difficulties at work (many have to stop working), and many feel socially isolated. Feelings of guilt and low self-esteem frequently develop (Anderson & Ferrans, 1997). Collinge (1994) states that the only known deaths by CFS are by suicide. So, depression as a primary disorder needs to be studied further. For instance, there is a need to focus on prior diagnoses of depression by exploring patients’ medical history, and to focus on undiagnosed symptoms of depression prior to the diagnosis of CFS by exploring patients’ lives through retrospective interviews with them and relatives. In addition, depression as a secondary symptom needs to be studied by exploring patients’ ways of coping and life circumstances post onset. Such studies might give some indication as to whether depression is primary or secondary. Overall, the evidence reviewed above suggests that there is insufficient support for either a purely physical or psychiatric model of causation. Physiological measures, such as the investigation of antibodies to specific viruses, mitochondrial abnormalities, and others pointing to a possibly physical origin are inconclusive, as different results have been obtained with different sufferers. Similarly, not all sufferers fulfill criteria for major depression or other psychiatric conditions (Jason et al., 1997). In any case, the discovery of any physiological or psychiatric abnormalities associated with CFS does not imply that these are primary factors and play a role in the development of CFS. It is important to reiterate that most studies have been cross-sectional or correlational; causal factors in the development of CFS can best be identified in longitudinal studies, although such studies are also limited by the difficulties in controlling potential confounding variables, such as learning and cross-generational problems. In addition, researchers have been using different diagnostic criteria; for instance, most American studies now employ the Fukuda et al. (1994) criteria, while most British studies employ those defined by Sharpe et al. (1991). As the American criteria are more restrictive, replication studies with British samples often yield different results, adding to the confusion surrounding the origin of the illness.

Integrative Models and Coping In light of the difficulty in pointing to a single etiological agent, an integrative model of causation may be more applicable to CFS. Physiological (e.g., viral infection, immune dysfunction), psychological (e.g., behavior, beliefs, and stress) and social factors (e.g., employment, interpersonal relationships) may all play a role (Moss-Morris, Petrie, & Weinman, 1996; Murray, 1992; Pepper, Krupp, Friedberg, Doscher, & Coyle, 1993; Ware, 1993; Yeomans & Conway, 1991). It is now widely assumed that immune dysfunction, vulnerability to infection, or both, in addition to a stressful environment,

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can lead to the development of CFS in some individuals (Lloyd, Wakefield, & Hickey, 1993; Thomas, 1993). It has also been proposed that the immune system is affected by both endogenous factors (e.g., genetic, hormonal, allergic, or psychological) and exogenous ones (e.g., nutritional, stress-related, environmental). The integrative approach focuses to a large extent on the coping behavior of individuals. For instance, it has been suggested that ineffective coping with stress before the illness might be associated with illness onset, and that ineffective coping with the physical and emotional consequences of the illness might be associated with chronicity (Blakely et al., 1991; Lewis et al., 1994; Moss-Morris et al., 1996; Ray, Phillips, & Weir, 1993; Surawy, Hackmann, Hawton, & Sharpe, 1995). The unknown nature of the etiology of CFS and its varying symptomatology have encouraged the development of numerous self-help coping strategies and treatments. These range from increased rest, vitamins and minerals, diets, complementary and alternative medicine (including socially accepted therapies such as acupuncture or homeopathy, and therapies relatively unknown in the Western world, such as flower remedy or polarity therapy) and antidepressants, to counseling and psychotherapy, to name just a few. It is striking that a majority of sufferers cope by increasing rest and reducing activity levels. There is, however, not enough evidence for the effectiveness of any of these treatments (Ax, Gregg, & Jones, 1997; Jason et al., 1997). In fact, some of the therapies adopted by patients can be detrimental to their health, be it excessive rest, which can lead to muscle wasting, or avoidance of certain foods. In any case, one of the CDC (Fukuda et al., 1994) diagnostic criteria indicates that fatigue does not decrease with bed rest, but if it does improve, it cannot be attributed to CFS. Finally, studies to assess the effectiveness of psychological interventions can be difficult, as sufferers are often reluctant to participate in psychological treatments or suddenly withdraw from it. This could be due to the social stigma attached to mental illness (Ax et al., 1997; Greenberg, 1990). The adaptiveness of some of these strategies has been the focus of much research employing an integrative approach. A useful summary of integrative models that focus on coping behavior has been given by Friedberg (1996). Three models reflect the most common approaches taken by clinicians or patients, and will be discussed in greater detail later in the text. For instance, there are those researchers who suggest that poor coping ability such as the inability to relax in times of stress could increase or perpetuate an immune overactivation which causes the symptoms of CFS (Antoni et al., 1994). Friedberg labeled this the immune activation model. There is good support for links between the immune system and psychological well-being in work done in the area of psychoneuroimmunology (e.g., Jason et al., 1995; Poteliakhoff, 1995; Steptoe, 1991), but no evidence exists as yet for any definite link. Many patients try to improve their practical and emotional coping efforts in order to avoid a perpetuation of the immune dysfunction, rather than to cure the illness, and most regard resting and time management as most effective. Wessely and his colleagues (e.g., Butler, Chalder, Ron, & Wessely, 1991) suggest that while CFS might be precipitated by a viral infection, the illness could be perpetuated by avoidance of activity (psychological maintenance model; Friedberg, 1996). For example, Wessely and Sharpe (1995) suggested that strategies such as extreme physical avoidance might lead to muscle wasting and further disability, while other ineffective coping strategies such as extreme concern for the illness might lead to mood disorder. The focus here is on gradual activity increase and antidepressive treatment, and has been shown to be effective in some patients. Friedberg and Krupp (1994) suggest

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that CFS is maintained by primary biological variables, but these also trigger secondary psychological reactions (e.g., depression and anxiety) which then determine behavioral and cognitive (e.g., phobia) reactions to the illness (psychological disorders as secondary to CFS). The therapeutic focus here is on treating secondary depression, and has also been shown to lead to some improvement. The latter two models suggest that the use of maladaptive coping strategies could contribute to a perpetuation of disability and depression, whether the original trigger continues to exert a direct influence or not. In light of the possible importance of coping in illness onset and adjustment, the existing coping literature in CFS will be reviewed, the importance of coping in various therapeutic approaches explored, their effectiveness discussed, and suggestions for further investigations made.

COPING RESEARCH: FINDINGS, METHODOLOGICAL ISSUES, AND IMPLICATIONS FOR THERAPY The investigation of coping in CFS has focused on two main issues: coping differences between different groups of sufferers, and possible associations between coping and outcome. Both lines of research, it has been suggested, can point to the adaptiveness or maladaptiveness of coping efforts. Adaptive strategies are those associated with physical and/or mental well-being and adjustment, while maladaptive strategies might be associated with illness maintenance or exacerbation of difficulties in daily activity, and others might be related to illness onset (Antoni et al., 1994). It should be mentioned that any study that examines coping behavior in CFS needs to consider the possibility that the cognitive processes involved in coping are adversely affected by the illness. At the same time it has to be said that findings about cognitive impairments in CFS have not led to any firm conclusions, so that it is difficult to say what such influences might be. For instance, there is evidence for memory or concentration deficits in some studies, which supports sufferers’ complaints (Riccio, Thompson, Wilson, Morgan, & Lant, 1992; Smith, Smith, & Toseland, 1991). Other studies have not been able to replicate these findings and it has been suggested that CFS sufferers generally perceive themselves to perform worse than they actually do in comparison to normal subjects (Ray et al., 1993; Sandman, Barron, Nackoul, Goldstein, & Fidler, 1993). Cognitive deficits, both actual and perceived, may make the use of some cognitive coping strategies difficult (such as mental distraction, e.g., because of an inability to concentrate on other issues, read a book, or watch television; or social support seeking, e.g., because of the difficulty remembering people’s names or following a conversation), therefore it is important to differentiate between what subjects do, should do, and are able to do. So, it might be useful to combine investigations of coping with an investigation of cognitive impairment. Table 2 gives an overview of the main studies conducted in recent years. These are discussed below.

Comparisons Between Groups Comparative studies have mainly focused on two coping dimensions: problem-focused coping (coping efforts directed at solving the problem or eliminating the stressor) and emotion-focused coping (coping efforts directed at reducing internal distress), based upon a model developed by Lazarus (1993). The comparison of coping with

WoC

Buchwald, Pearlman, Kith, & Schmaling (1994) Lewis, Cooper, & Bennett (1994) Petrie, Moss-Morris, & Weinman (1995) Ray, Jefferies, & Weir (1995)

Written response IMQ

WoC

COPE

Antoni, Brickman, Lutgendorf, et al. (1994)

Coping Strategies

147

45

4 scales

47

348

282

21

29

65

207

45

57

30 females

58

Sample size

50

50

Number of Items

Catastrophizing

Emotion-focused coping Problem-focused coping 8 scales

Maintaining activity Accommodating to the illness Focusing on symptoms Information seeking 13 scales

8 scales

WoC

IMQ

8 scales

WoC

Measure

Ray, Phillips, & Weir (1993)

Blakely, Howard, Sosich, Murdoch, Menkes, & Spears (1991) Schmall (1992)

Authors

Findings

CFS sufferers were more problemfocused than irritble-bowel sufferers CFS sufferers tended to have catastrophic thoughts Maintaining activity negatively with impairment; accommodating to the illness and behavioral disengagement positively. Perceived control or illness attributions were not correlated with coping

Mental and behavioral disengagement and denial correlated with greater perceived illness burden and disruptions in social relationships No gender differences were obtained

CFS sufferers used more emotionfocused coping than chronic pain sufferers Positive reappraisal and distancing correlated positively, escape/ avoidance and accepting responsibility negatively with psychological well-being Maintaining activity correlated positively with anxiety and negatively with impairment; accommodating to the illness showed opposite effect

TABLE 2. Research on Coping with Chronic Fatigue Syndrome (CFS)

170 S. Ax et al.

UCL

Heijmans (1998)

5 scales

4 scales

Pressing on Avoidance 12 scales

20

45

48

98

137

⬎100 233

Sufferers tended to avoid social stressors and activity Disengagement and venting of emotions were positively correlated with disability and reduced psychological health. Positive reinterpretation and seeking social support were associated with psychological well-being Information-seeking predicted fatigue, and behavioral disengagement predicted impairment Avoidance was positively correlated with a pessimistic view of the illness and illness identity. Venting of emotions, seeking social support and problemfocused coping were negatively correlated with them. Avoidance correlated negatively with social functioning, mental health, and vitality.

Note. This table presents studies on coping with CFS. It shows the name of the authors, the name of the instrument used, the coping strategies assessed or the number of coping scales in the questionnaire, and the sample size. WoC ⫽ Ways of Coping Questionnaire, IMQ ⫽ Illness Management Questionnare, COPE ⫽ Coping Orientations to Problems Experienced Scale, UCL ⫽ Utrecht Coping Questionnaire.

IMQ

COPE

Observations

Ray, Jefferies, & Weir (1997)

Surawy, Hackmann, Hawton, & Sharpe (1995) Moss-Morris, Petrie, & Weinman (1996)

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CFS to coping with other illnesses appears to have yielded some contradicting results, but this might be due to the fact that the studies have largely investigated different aspects of coping. For example, Blakely et al. (1991), who used the Ways of Coping Questionnaire (WoC; Folkman & Lazarus, 1988), suggested that CFS sufferers used a greater degree of emotion-focused coping as compared to chronic pain sufferers. On the other hand, Lewis et al. (1994), who also employed the WoC, suggested that CFS sufferers were more problem-focused than irritable bowel sufferers, but this was not statistically tested and so deserves further study. These are interesting findings, as it has been suggested that sufferers of different chronic, disabling illnesses often go through stages of adjustment in which they employ similar strategies (Morse & Johnson, 1991). So, if the coping behavior of CFS sufferers differs from that of other patients, CFS-specific therapeutic interventions should be developed that focus specifically on strategies such as emotion- or problem-focused coping. In addition, coping differences might be used for diagnostic purposes. Nevertheless, little research has so far been conducted, and the results provided by Blakely et al. (1991) and Lewis et al. (1994) need to be replicated in order to be able to generalize. Another comparative investigation has focused on gender differences. Buchwald, Pearlman, Kith, and Schmaling (1994) employed the WoC to compare male and female CFS sufferers on the problem- and emotion-focused dimensions. However, the results suggest that there was no gender difference in coping with CFS. Although an analysis of underlying strategies describing emotion- and problem-focused coping (e.g., avoidance, distancing, or seeking social support) might yield some gender differences, this is in line with results obtained in other illnesses (Morse & Johnson, 1991). It could suggest that men and women are subjected to similar experiences (e.g., disability, unemployment) requiring similar coping strategies. While comparative investigations highlight the particular strategies employed by CFS sufferers, other studies have concentrated on relating coping to outcome. Here, the principal aim is to increase our understanding of the adaptiveness and maladaptiveness of coping in CFS.

Relationship Between Coping and Outcome To investigate sufferers’ coping behavior and relate it to outcome, Ray et al. (1993) developed a new questionnaire specific to CFS. The Illness Management Questionnaire (IMQ) assesses problem-focused coping with physical symptoms of CFS. Four factors were obtained: maintaining activity (ignoring symptoms), accommodating to the illness (organizing one’s life to avoid overexertion and stress), focusing on symptoms (preoccupation with symptoms), and information-seeking (seeking for information about CFS and readiness to try remedies; Ray et al., 1993). Some of these strategies were significantly associated with psychological and physical health. For instance, maintaining activity was positively associated with anxiety and negatively with impairment, while accommodating to the illness showed the opposite effect. Similar results were later obtained by Ray et al., (1995). In a recent study, Heijmans (1998), using the Utrecht Coping Questionnaire, found that problem-focused coping and seeking social support were positively correlated with mental health. Other researchers have also obtained significant associations between coping and psychological and physical health. For example, significant associations between psychological well-being and disengagement (cognitive or behavioral distancing from the illness) and positive reinterpretation (positive reappraisal of the illness, or acknowl-

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edgement of its benefits) were obtained in several studies, including Schmall (1992) who employed the WoC, and Antoni et al. (1994) and Moss-Morris et al. (1996), who used the COPE (Carver, Scheier, & Weintraub, 1989). For example, Antoni et al. (1994) found that coping strategies such as mental and behavioral disengagement and denial (refusal to believe in the existence or seriousness of the illness) were associated with greater perceived illness burden and disruptions in social relationships. Further, Moss-Morris et al. (1996) found that disengagement and venting of emotions were associated with disability and reduced psychological health, while positive reinterpretation and seeking social support were associated with psychological well-being. Heijmans (1998) found that cognitive-avoidant coping was negatively related to social and mental functioning and vitality. However, this author emphasized in her study that associations between coping and adaptive functioning (social, mental, and physical) were generally weak. In fact, both Moss-Morris and Heijmans suggested that beliefs about CFS (e.g., about the course and duration) might be a more reliable predictor of well-being than coping. Generally, these studies suggest that the use of strategies such as denial and positive reinterpretation might be important predictors of physical and mental well-being. This could again be of importance in the development of interventions that focus on the acquisition of effective coping skills. So, should sufferers try to be positive, and be encouraged to distance themselves less from the illness but seek greater support from family and friends? This is usually easier said than done, especially in light of the social isolation experienced by many sufferers, the uncertainty surrounding their future, and the views expressed by many self-help organizations which favor activity avoidance. At present, it is too early to make specific recommendations. The studies described above have not yet produced enough evidence to develop specific suggestions for therapy. One reason for this is methodological consideration. For example, direct comparisons of results concerning coping and outcome across studies are often difficult because of the use of different instruments to assess both coping and well-being. Studies employed coping questionnaires such as the WoC (with different numbers of items), the IMQ, and the COPE. The reliability and validity of these questionnaires varies. The IMQ should be more suitable to assess problem-focused coping in CFS, as it was specifically designed for use with CFS sufferers, while the COPE and the WoC have been shown to be useful to assess both emotion- and problem-focused coping in other illnesses. In addition, all studies were cross-sectional and are therefore susceptible to time of measurement effects, but this is common to all nonlongitudinal studies. In addition, it is not clear in what way severity of disease is related to coping. Although degree of dysfunction appears to be related to the use of some strategies (Moss-Morris et al., 1996), studies have failed to compare groups of different illness severities (this refers to physical symptomatology, for example, degree of fatigue, as patients with depression are usually excluded from the studies on the basis of the existing diagnostic criteria). This, however, is difficult due to the subjective nature of the complaint and lack of a physical indicator of illness severity. Finally, sample sizes have differed greatly, some being rather small compared to the number of variables investigated (e.g., Blakely et al., 1991) which does not allow for meaningful conclusions to be drawn. In any case, structured questionnaires are limited in the amount of information they provide about coping. A qualitative approach might therefore be recommended to explore coping in detail and possibly make suggestions for further quantitative study. In light of this, Surawy et al. (1995) explored sufferers’ coping by means of self-

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reports. They suggested that avoidance behavior and beliefs about physical etiology were factors in the perpetuation of CFS. Interestingly, they also suggested that the coping style of “pressing on”—trying even harder in order to meet targets despite increasing exhaustion, which was employed in times of stress prior to the onset of CFS— might lead to the precipitation of CFS in combination with acute illness. However, it is important to acknowledge that it is not possible to generalize from qualitative research. This is due to the small sample size and the uniqueness of each interview and observation (Bowling, 1997). In any case, coping descriptions in this, as well as in Lewis et al.’s (1994) study, were retrospective and therefore subject to memory problems such as forgetting. The investigation of the association between coping and outcome poses the inherent problem that it does not point to causal mechanisms. Thus, it is not clear whether different degrees of disability lead to the use of different coping strategies, or if coping behavior leads to varying degrees of disability. Some studies have tried to overcome this problem by looking at two time-points (Ray, Jefferies, & Weir, 1997), but appropriate longitudinal research is necessary to shed light on this issue. So, it is not possible to make generalizations concerning illness development and maintenance based on significant associations between coping and outcome, or on the basis of qualitative data. In any case, it is possible that there are no generally adaptive or maladaptive strategies in CFS. According to Lazarus (1993), coping strategies are not inherently adaptive or maladaptive, but their effectiveness depends on individuals’ personal circumstances, goals, and expectations. For instance, a strategy such as activity avoidance may be related to psychological well-being if it is associated with immediate relief, but may be detrimental to physical health due to muscle wasting (Ray et al., 1995). One solution to this problem, according to Antoni et al. (1994), is a cognitive-behavioral intervention with the goal of modifying maladaptive cognitions and thereby maladaptive coping. So, for instance, the aim would be to help sufferers understand the importance of activity, so that increased activity would not be associated with fear of a relapse. Am emphasis on both cognitions and coping behavior also appears to be useful in light of Moss-Morris et al.’s (1996) suggestions that beliefs about the origin of CFS, perceived control, and consequences of CFS are greater predictors of illness adjustment than coping. Summarizing, it is important to acknowledge that the evidence, which has mainly been obtained on the basis of scores on self-report coping questionnaires and tests of psychological well-being (e.g., Moss-Morris et al., 1996; Ray et al., 1995) or by using observational methods (e.g., Surawy et al., 1995) is at present no stronger than associational. However, significant correlations between coping and well-being could suggest that the use of effective cognitive and behavioral coping efforts may improve quality of life and avoid illness chronicity, and so further longitudinal research is needed. Future studies should also clarify the role played by dysfunctional coping in the initial development of CFS. Recently, in an attempt to look at causality, Ray et al., (1997) conducted prospective research in CFS. In a 1-year follow-up study, they found that information-seeking predicted fatigue, and behavioral disengagement predicted impairment, which appears to support earlier results. But coping was not assessed at time 2, and therefore it is not known if participants’ coping behavior changed, and so if later coping was associated with well-being. Further elaboration of these methods, for example, by assessing coping at subsequent stages, should yield some interesting results.

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Questions Which Have Emerged From These Studies The study of coping with CFS has been slowly gaining momentum and important insights have been obtained. However, several questions have remained unanswered, especially those concerning the relationship between coping and well-being, and new questions have emerged. This section will focus on some of these. For example, it has not been addressed in past research which coping strategies may be perceived as helpful by sufferers, irrespective of their associations with outcome. Ray et al. (1995), Surawy et al. (1995), and Moss-Morris et al. (1996) have made important suggestions concerning associations between illness beliefs, choice of coping strategy, and well-being. However, sufferers’ own perceptions about the effectiveness of strategies are not known. It has only been proposed that most sufferers believe that rest and activity avoidance are useful (Wessely, Butler, Chalder, & David, 1991), and the popular literature describes treatments that some sufferers have found to be helpful (e.g., Macintyre, 1992). The lack of knowledge surrounding patients’ beliefs about coping effectiveness is unfortunate because, according to Lazarus’ framework (Lazarus, 1993), peoples’ perceptions or appraisals of the situation (as challenge, harm, or threat, defined as primary appraisal) lead to the evaluation of available resources and the usefulness of coping strategies (secondary appraisal), and ultimately to the choice of particular strategies. So, greater understanding of sufferers perceptions of coping effectiveness might increase our understanding of their coping behavior, and therefore need to be studied (e.g., with questionnaires or interviews). A relationship between perceived effectiveness and coping has been found in other illnesses, for example, Bar-Tal and Spitzer (1994). There is also a lack of research into whether coping is modified as CFS progresses. In longitudinal studies of some other chronic illnesses, sufferers’ reports suggest that the way in which they cope with the illness changes over its course (Gotay, 1984; Heim, Augustiny, Schaffner, & Valach, 1993), and it has been suggested that such a change may also occur in CFS. For example, Lewis et al. (1994) and Wessely et al. (1991) have pointed out that as the illness progresses and disability increases, emotion-focused strategies assume a more central role. But it is not known why such changes occur, or similarly, if sufferers’ perceptions of the effectiveness of strategies change over time. Within the framework of the Theory of Coping and Adaptation (Lazarus, 1993), any perceived change in coping over time could be related to perceptions of a changing effectiveness of the available coping strategies. So, the need for a longitudinal design is again stressed. Finally, no published studies have addressed the coping behavior of caregivers of CFS sufferers, despite the vast array of problems reported by them (e.g., Macintyre, 1992; Shepherd, 1992). This is true despite suggestions that greater attention should be paid to the sufferer-caregiver relationship, as sufferers and their caregivers might mutually influence each other in their coping efforts (e.g., Revenson, 1994). It is interesting that recently some researchers have focused on the stresses experienced by caregivers and the support they offer to sufferers (Ferrari & Jason, 1997; Goodwin, 1997; Shlaes & Jason, 1996). For instance, like sufferers and because of their caring commitments, caregivers often feel socially isolated or stigmatized. They need to deal with the increasing disability of a loved one, while spouse caregivers frequently experience low martial satisfaction. On a practical level, caregivers often have to provide exhausting physical care like washing and feeding the relative, in addition to juggling work, household duties, and raising a family. Like some sufferers, some caregivers

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have to give up their employment, while others, mostly women, have to return to work after years of absence in order to feed the family and pay for medical bills. Especially for very young or elderly caregivers, accepting such responsibilities can be a severe burden, which might affect the quality of care and emotional support given. In light of the fact that many CFS sufferers have spouses, parents, or even children caring for them over many years, research in this area is strongly urged.

COPING-FOCUSED THERAPY IN CFS Several psychosocial therapies have been considered for CFS including psychoanalysis (Taerk & Gnam, 1994) and therapeutic interventions focusing on the intrapsychic and interpersonal aspects of the patient (Burke, 1992). In addition, Abbey (1996) suggests group and supportive psychotherapy, relaxation- and meditation-based therapies, and marital and family therapy. Action research involving patients’ development of models, language, and service delivery, has also been suggested (Denz-Penhey & Murdoch, 1993). But the lack of research activity in this area does not allow for meaningful conclusions concerning their effectiveness. The only approach attracting wider interest, possibly due to its benefits to CFS patients, is cognitive behavior therapy (CBT). However, in most approaches suggestions concerning the therapeutic or educational value of the findings on coping described earlier have been sparse. Although some researchers have acknowledged that findings could be used in the development of new methods of psychotherapy or in counseling, only few have attempted to develop such interventions. In CBT, the emphasis is on finding out which strategies work best for the client, taking into account their beliefs and expectations (e.g., Goldfried, 1980; Lazarus, 1980; Meichenbaum, 1977). CBT has been shown to be effective in increasing psychological well-being and to reduce symptom severity in a number of chronic illnesses, including CFS (e.g., Butler et al., 1991; DeVellis et al., 1988; Greene & Blanchard, 1994; Sharpe et al., 1996. For a general overview see Devins & Binik, 1996). In CFS, cognitive behavior therapy has been used by proponents of both the “psychological maintenance model” and the model of “psychological reactions as secondary to CFS.” For example, Wessely’s team (e.g., Butler et al., 1991; Wessely et al. 1991) have developed an intervention that focuses on the modification of illness attributions. They suggest that most sufferers have unrealistic illness attributions (e.g., persistent viral infection), and that such attributions can be behaviorally limiting and lead to activity avoidance. The modification of illness attributions, it is suggested, is achieved by helping patients to acknowledge a possible interaction of a variety of organic and psychological factors in the development of CFS. Patients are then helped to gradually increase their activity levels. For example, they are asked to walk increasing distances or to perform exercises of increasing difficulty. As mentioned earlier, some patients receive antidepressive medication at the same time. This approach predominantly focuses on the reduction of activity avoidance, and so its usefulness might be limited as the original trigger can have disappeared (e.g., a virus) or still be active (e.g., immune system dysfunction). While Butler et al. (1991) reported an uncontrolled CBT trial with CFS patients, the first published randomized controlled trial of CBT was conducted by Lloyd, Hickie, Brockman, et al. (1993). Ninety patients received immunological therapy with dialyz-

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able leukocyte extract, CBT, or a combination of both. Well-being was assessed with visual analogue scales assessing muscle pain, headache, and concentration ability, record at biweekly intervals over 7 months. In addition, the Karnofsky scale to assess functioning, and the Profile-of-Mood States questionnaire was used. Contrary to expectations, no important differences were found between the groups; only those in the combination group had a higher rating for quality of life. This study therefore did not find support for any beneficial effects of CBT over other treatments, but its focus was mainly on a reduction of activity avoidance, and greater focus on a wider range of coping strategies might prove useful. In a recent study, Deale, Chalder, Marks, and Wessely (1997) compared CBT (graded exercise and cognitive restructuring) to relaxation in a randomized controlled trial. Seventy per cent of the 53 CBT patients who completed the treatment showed improved physical functioning, while only 19% of the relaxation group improved. No significant differences were obtained for mood. The results led the authors to suggest that CBT was more effective than relaxation in CFS. Generally, however, only few studies have been conducted to study the effectiveness of this approach, some indicating fatigue reduction (Wessely et al., 1991) and others showing insignificant effects (Deale et al., 1998). This might be because mainly focusing on activity avoidance, its role in the maintenance of CFS not being clear and with the exclusion of other coping strategies, it might not be sufficient to help the sufferer adjust to CFS or even recover from it. Sharpe and his colleagues (e.g., Sharpe et al., 1996; Surawy et al., 1995) developed a cognitive behavior therapy which, they proposed, was less adversarial than Wessely’s (Sharpe et al., 1996) but involved greater collaboration between sufferers and therapists. Apart from advocating an increase in activity, this approach encourages the use of other cognitive coping strategies to reduce self-perfectionism and problem-solving. So, specific problems in the patient’s life and solutions are discussed. To investigate the effectiveness of this approach, Sharpe et al., (1996) conducted a randomized controlled trial. In this study, 60 patients received either medical care alone and the advice to increase activity levels, or medical care plus CBT, which involved the evaluation of illness beliefs, gradual increase in activity, and various coping strategies. CBT involved 16 individual hours over 4 months. The results suggested that medical care plus CBT was more effective in increasing patient functioning (as assessed on the Karnovsky scale) than medical care alone. However, the emphasis on coping in Sharpe et al.’s (1996) approach is again limited and secondary to the emphasis on activity. Also, by encouraging all sufferers to reduce perfectionism and problem-solving, this approach suggests little appreciation of people’s appraisal of their specific personal and environmental contexts. Finally, it is not acknowledged that people may need to modify their coping strategies over the course of the illness and with varying life circumstances. In line with the “psychological reactions as secondary to CFS” model, another intervention has been developed by Friedberg and his colleagues (Friedberg, 1996; Friedberg & Jason, 1998; Friedberg & Krupp, 1994). These researchers propose modifying a number of thinking patterns (maladaptive cognitions), so that the therapeutic focus is not simply on illness attributions. For that, patients are taught cognitive coping strategies (which often also involve behavioral strategies) such as relaxation, guided imagery, tolerance of illness limitation, cognitive restructuring of anger and guiltevoking beliefs, and attentional distraction. The authors (Friedberg & Jason, 1998) advocate an 8-session behavioral treatment plan.

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So, Friedberg and Krupp’s (1994) approach to intervention indicates a focus on a variety of coping efforts. Clients are trained in a variety of coping skills, so that they are able to use those which they appraise as most helpful within their personal circumstances. Another strength of Friedberg and Krupp’s approach is that strategies are not inherently classified as adaptive or maladaptive, but the aim is to adjust the therapeutic intervention to the individual client, for example, to their personal goals, circumstances, and social environments. This therapy was shown to be effective in reducing depressive symptoms but not perceptions of fatigue severity (Friedberg & Krupp, 1994). While this was considered a successful result, the authors acknowledge that patients who were experiencing coping difficulties may have been more likely to participate in the intervention trials than those who thought they were coping effectively, even if using so-called maladaptive strategies. This is a problem that needs to be addressed in further studies. In summary, past interventions suggest that there should be a greater focus on coping strategies other than resting and activity avoidance. The effectiveness of various treatment trials focusing on gradual activity increase has not been established fully, and sufferers are often reluctant to participate in these. At this same time, several research studies suggest that coping strategies such as positive reappraisal and problemfocused coping might be associated with well-being. Also, they suggest that sufferers might be more willing to employ coping strategies that they perceive to be effective, rather than those strategies suggested by practitioners. This finding is in concert with Lazarus’ (1993) model of Coping and Adaptation, which holds that there are no universally beneficial strategies, and so that different strategies might be effective for different people in similar circumstances. While there might be agreement by researchers as to the adaptive nature of certain strategies (e.g., graded exercise), their helpfulness in individual circumstances still needs to be investigated. In therapy therefore, rather than advocating generally adaptive or maladaptive strategies, adjusting coping strategies to individuals’ circumstances and greater collaboration with the client might be advantageous (Ax et al., 1997). This could be achieved by developing individual treatment plans rather than advocating similar interventions for all clients. Finally, it is suggested that therapeutic interventions need to consider possible changes in coping strategies and their effectiveness over time. As a client’s life circumstances change, sometimes as a direct consequence of the illness (e.g., loss of employment, or divorce) and they learn to master certain difficulties (e.g., planning their daily activities), different coping efforts are needed. This is also in line with Lazarus’ theory, as people appraise and reappraise situations over time and adjust their coping behavior accordingly. So, therapeutic interventions need to take into account the changing nature of coping and coping effectiveness, by following up with clients and reassessing coping. REFERENCES Abbey, S. (1996). Psychotherapeutic perspectives on chronic fatigue syndrome. In M. Demitrack, S. Abbey, et al. (Eds.), Chronic fatigue syndrome: An integrative approach to evaluation and treatment (pp. 185–211). New York: Guilford Press. Abbey, S., & Garfinkel, P. (1990). Chronic fatigue syndrome and the psychiatrist. Canadian Journal of Psychiatry, 35, 625–633. Anderson, J., & Ferrans, C. (1997). The quality of life of persons with chronic fatigue syndrome. Journal of Nervous and Mental Disease, 185, 359–367.

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