Illness perceptions and mood in chronic fatigue syndrome

BACKGROUND: Individual beliefs and cognitions may affect adjustment to chronic fatigue syndrome (CFS) and illness perceptions, in particular, have been reported to correlate with both disability and psychological adjustment to CFS in self-diagnosed cases. OBJECTIVES: The aim of the present study was to examine these relationships in a clinic sample of CFS patients assessed by both a physician and psychiatrist. METHOD: A sample of 173 patients referred to a multidisciplinary CFS clinic and fulfilling current operational criteria for CFS [Ann Intern Med 121 (1994) 953; J R Soc Med 84 (1991) 118.] were randomly selected from the clinic database and surveyed with the Hospital Anxiety and Depression scale, Fatigue Questionnaire and Illness Perceptions Questionnaire [J Psychosom Res 37 (1993) 147; Psychol Health 11 (1996) 431; Acta Psychiatr Scand 67 (1983) 361.]. RESULTS: A total of 126 patients responded (73% response rate). The illness perception components studied were consequences (of illness), illness identity, causes (of illness), the ability to control/cure the illness and (expected) timeline of the illness. These components accounted for 15%, 28% and 30% of the variance in levels of fatigue, depression and anxiety, respectively. Two of the illness perception components (consequences and illness identity) were stronger predictors of fatigue score than mood scores. CONCLUSIONS: These findings confirmed in a clinical sample that illness perceptions are associated with variation in both disability and psychological adjustment in CFS. Illness perceptions may have an important and long-lasting effect on adaptation to CFS, and it is necessary to have a greater understanding of their role in order to tailor effective interventions for the condition.     

Psychological correlates of functional status in chronic fatigue syndrome

Background: The present study was designed to test a cognitive model of impairment in chronic fatigue syndrome (CFS) in which disability is a function of severity of fatigue and depressive symptoms, generalized somatic symptom attributions and generalized illness worry. Methods: We compared 45 CFS and 40 multiple sclerosis (MS) outpatients on measures of functional ability, fatigue severity, depressive symptoms, somatic symptom attribution and illness worry. Results: The results confirmed previous findings of lower levels of functional status and greater fatigue among CFS patients compared to a group of patients with MS. Fatigue severity was found to be a significant predictor of physical functioning but not of psychosocial functioning in both groups. In CFS, when level of fatigue was controlled, making more somatic attributions was associated with worse physical functioning, and both illness worry and depressive symptoms were associated with worse psychosocial functioning. Conclusions: Our findings support the role of depression and illness cognitions in disability in CFS sufferers. Different cognitive factors account for physical and psychosocial disability in CFS and MS. The SF-36 may be sensitive to symptom attributions, suggesting caution in its interpretation when used with patients with ill-defined medical conditions.     

Illness worry and disability in fibromyalgia syndrome

Fibromyalgia (FM) is a common syndrome of functional somatic symptoms. This article examines whether an amplifying somatic style (increased body awareness and illness worry) might explain the distress and disability expressed by FM patients. Twenty FM patients were compared to twenty-three rheumatoid arthritis (RA) patients on measures of depressive and somatic symptomatology, pain, disability, and amplifying somatic style. FM patients reported greater somatic symptomatology, equivalent levels of pain, and less physical disability than did RA patients. No differences were observed between groups on body awareness or illness worry. Illness worry correlated highly with symptomatology for both groups but with physical disability only among FM patients. Results suggest that disability in functional somatic syndromes may be determined by patients' worry about having a serious disease. Feelings of vulnerability and apprehension about having an illness of unknown origin may contribute to FM sufferers' activity limitations, inability to sustain a work effort, and varied somatic distress.     

Associations between the impact of terrorism and health perceptions of patients

OBJECTIVE: Previous studies have demonstrated the effects of the September 11th 2001 terrorist attacks on anxiety and anxiety-related conditions in Americans. However, data regarding associations between the attacks and patients' health perceptions are lacking. The objective of this study was to explore associations between the personal impact of the September 11th attacks and patients' perceptions of health and illness. METHOD: We performed a cross-sectional survey of 303 adult African-American, Caucasian, and Hispanic patients at primary care clinics in Houston, Texas. Data were collected between October 15, 2001 and March 1, 2002. We developed items to measure the impact of the September 11th attacks and patients' quality of life. Previously validated scales were used to measure health status, health locus of control, preferences regarding the patient-physician relationship, and patients' explanatory models of illness. RESULTS: Twenty-two percent of patients reported no impact from the attacks, 41% reported mildly negative impact, 22% reported moderately negative impact, and 15% reported extremely negative impact in their lives. In multivariate analysis, demographic characteristics were not associated with impact from the attacks. However, patients who perceived a more external locus of control with respect to health and patients who reported greater meaning of illness in their lives also reported more negative impact from the September 11th attacks. CONCLUSIONS: The September 11th terrorist attacks had at least a somewhat negative impact for a majority of patients far from the site of the nearest attack, and regardless of their demographic backgrounds. The amount of negative impact that patients perceived as a result of the terrorist attacks correlates with certain illness perceptions, including an external health locus of control and a perception of greater meaning of illness in one's life. Such correlations may indicate an effect of terrorism on patients' illness behaviors. Further research is needed to better understand effects of the threat of terrorism on the general health and illness behaviors of patients.     

Personality and social attitudes in chronic fatigue syndrome

One hundred one chronic fatigue syndrome (CFS) patients attending a specialist CFS clinic were compared with 45 rheumatoid arthritis (RA) patients on a range of standardized questionnaire measures, to investigate whether CFS patients are characterized by particular personality traits or social attitudes. No differences were found between CFS and RA patients in measures of perfectionism, attitudes toward mental illness, defensiveness, social desirability, or sensitivity to punishment (a concept related to neuroticism), on either crude or adjusted analyses. Alexithymia scores were greater in the RA patient group (p<0.05). Social adjustment, based on subjective assessment of overall restriction in activities and relationship difficulties, was substantially poorer in the CFS group (p<0.001). This was highly associated with depressive symptoms, but remained significant even after adjusting for depressive symptomatology. There was no evidence from this study of major differences between the personalities of CFS patients and RA patients. The stereotype of CFS sufferers as perfectionists with negative attitudes toward psychiatry was not supported.     

Premorbid "overactive" lifestyle in chronic fatigue syndrome and fibromyalgia. An etiological factor or proof of good citizenship?

OBJECTIVE: In a former study, we have shown that patients suffering from chronic fatigue syndrome (CFS) or chronic pain, when questioned about their premorbid lifestyle, reported a high level of "action-proneness" as compared to control groups. The aim of the present study was to control for the patients' possible idealisation of their previous attitude towards action. METHODS: A validated Dutch self-report questionnaire measuring "action-proneness" (the HAB) was completed by 62 randomly selected tertiary care CFS and fibromyalgia (FM) patients, as well as by their significant others (SOs). RESULTS: HAB scores of the patients and those of the SOs were very similar and significantly higher than the norm values. Whether or not the SO showed sympathy for the patient's illness did not influence the results to a great extent. SOs with a negative attitude towards the illness even characterized the patients as more "action-prone." CONCLUSIONS: These results provide further support for the hypothesis that a high level of "action-proneness" may play a predisposing, initiating and/or perpetuating role in CFS and FM.     

Functional status,neuropsychological functioning,and mood in chronic fatigue syndrome (CFS): relationship to psychiatric disorder

Individuals with chronic fatigue syndrome (CFS) face chronic physical debilitation, reduced neuropsychological functioning, and changes in emotional well-being that significantly detract from quality of life. The role of psychiatric disturbance in reducing quality of life in CFS remains unclear. In the current investigation, the role of psychiatric status in reducing health-related quality of life in CFS was examined. Four subject groups were compared on measures of functional well-being, mood, and neuropsychological status: individuals with CFS and no history of psychiatric illness, individuals who had current symptoms of psychiatric illness that began after their CFS diagnosis, individuals who had current symptoms of psychiatric illness that began before their CFS diagnosis, and a healthy sedentary control group. Overall, it was found that individuals with CFS suffer from profound physical impairment. Concurrent psychiatric illness, however, did not adversely affect physical functional capacity. Physical functional capacity was not worse in individuals with a concurrent psychiatric illness. As expected, concurrent psychiatric illness was found to reduce emotional well-being. Moreover, individuals with a psychiatric illness that predated the onset of CFS suffered the greatest emotional distress. Thus, an individual's psychiatric history should be considered when attempting to understand the factors maintaining disability in CFS.     

Symptom patterns in long-duration chronic fatigue syndrome

OBJECTIVE: Our objective was to evaluate symptom patterns in patients with chronic fatigue syndrome (CFS) who were ill for 10 or more years. METHODS: This cross-sectional self-report study compared patient groups with long-duration (median = 18 years; n = 258) and short-duration (median = 3 years; n = 28) CFS to a group of healthy significant others (n = 79) on symptomatic, neurocognitive, and psychological variables. Data were gathered from a 574-item postal questionnaire. RESULTS: A principal-components analysis of CFS symptom data yielded a three-factor solution: cognitive problems; flu-like symptoms; and neurologic symptoms. Compared with the short-duration CFS group, the long-duration group had significantly higher CFS symptom severity scores (p < 0.04), largely attributable to increased cognitive difficulties. A subgroup comparison of subjects ill for < 3 years versus those ill 4-7 years suggested that denial coping strategies were more likely in those participants with the shorter illness duration. Significant differences between both CFS groups and healthy controls were found in a number of comorbid disorders. Participants with CFS most often endorsed immune/viral abnormalities and persistent stress as important perceived causes of their illness. CONCLUSION: Participants with long-duration CFS reported a large number of specific cognitive difficulties that were greater in severity than those reported by participants with short-duration CFS. The pattern of comorbid disorders in the CFS groups was consistent with hypersensitivity and viral reactivation hypotheses.     

Do illness perceptions predict health outcomes in primary care patients? A 2-year follow-up study

OBJECTIVE: Little is known about whether illness perceptions affect health outcomes in primary care patients. The aim of this study was to examine if patients' illness perceptions were associated with their self-rated health in a 2-year follow-up period. METHODS: One thousand seven hundred eighty-five primary care patients presenting a new or recurrent health problem completed an adapted version of the illness perception questionnaire and the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36) at baseline and 3, 12, and 24 months' follow-up. Linear regressions were performed for (1) all patients, (2) patients without chronic disorders presenting physical disease, and (3) patients presenting medically unexplained symptoms (MUS). RESULTS: Negative illness perceptions were associated with poor physical and mental health at baseline. They most strongly predicted changes in health status at follow-up for the whole group of patients. Patients presenting with MUS had more negative illness perceptions and lower mental and physical components subscale of the SF-36 scores at all time points. CONCLUSIONS: Patients' perception of a new or recurrent health problem predicts self-reported physical and mental health up to 2 years after consulting the general practitioner and offers an obvious starting point for addressing nonbiomedical aspects of illness.     

Chronic fatigue syndrome of childhood

OBJECTIVE: To examine clinical specificity in chronic fatigue syndrome (CFS) of childhood, by comparing clinical features in childhood CFS and in emotional disorders (ED). METHOD SAMPLE: 28 children with CFS; 27 with ED. MEASURES: History of disorder; K-SADS psychiatric interviews; self-esteem and physical symptoms questionnaires; premorbid history, behavioural and personality assessments. RESULTS: There were high levels of comorbid emotional disorders in children with CFS, and the two groups were comparable on self-esteem, but CFS children endorsed more fatigue and other somatic symptoms. The two groups were comparable on age at illness onset, but parents of children with CSF reported more biological illness precipitants, more pre-morbid recurrent medical problems and infections. The CFS group had fewer pre-morbid psychological problems and less psychiatric comorbidity than the ED group. CONCLUSION: There is considerable clinical overlap between CFS and ED of childhood, but there are also differences in clinical presentation between these disorders.     

A cluster analysis of patients with schizophrenia in community care

In a sample of patients with schizophrenia, four clusters were identified and service use and relatives' satisfaction analyzed. In the first cluster, patients' severity of illness was mild and their use of services low. In the second, patients' disability was more severe; psychiatric symptoms were low in severity, family burden was moderate, and use of community services was more intensive. In the third cluster, patients had serious disability and severe positive symptoms; their families suffered distressing burdens, and their use of hospital and community services was intensive. In the fourth cluster, patients' disability was very severe, negative symptoms were prominent, and relatives' burden was moderate; use of hospital services was frequent, and use of community services was less so.     

Severe Versus Moderate Criteria for the New Pediatric Case Definition for ME/CFS

The new diagnostic criteria for pediatric ME/CFS are structurally based on the Canadian Clinical Adult case definition, and have more required specific symptoms than the (Fukuda et al. Ann Intern Med 121:953–959, 1994) adult case definition. Physicians specializing in pediatric ME/CFS referred thirty-three pediatric patients with ME/CFS and 21 youth without the illness. Those who met ME/CFS criteria were separated into Severe and Moderate categories. Significant differences were found for symptoms within each of the six major categories: fatigue, post-exertional malaise, sleep, pain, neurocognitive difficulties, and autonomic/neuroendocrine/immune manifestations. In general, the results showed participants who met the Severe ME/CFS criteria reported the highest scores, the Moderate ME/CFS group show scores that were a little lower, and the control group evidenced the lowest scores. Findings indicate that the Pediatric Case Definition for ME/CFS can distinguish between those with this illness and controls, and between those with Severe versus Moderate manifestations of the illness.     

In search of a new balance. Can high "action-proneness" in patients with chronic fatigue syndrome be changed by a multidisciplinary group treatment?

OBJECTIVE: The purpose of this study is to investigate changes in action-proneness (a cognitive and behavioral tendency toward direct action) after a multidisciplinary group intervention, including cognitive behaviour therapy (CBT) and graded exercise therapy (GET). METHODS: Patients with chronic fatigue syndrome (n=62) completed three versions of a Dutch self-report questionnaire evaluating action-proneness retrospectively that is (1) before illness onset, (2) before treatment and (3) after treatment. Significant others (n=62) also gave their opinion about the patients' action-proneness at time points 1 and 2. RESULTS: Premorbid action-proneness levels considerably dropped after illness onset. After treatment, action-proneness levels significantly increased again, although levels remained below premorbid levels. CONCLUSION: High action-proneness retrospectively reported by CFS patients can be adaptively modified by a multidisciplinary group treatment including CBT and GET.     

Correlates of illness worry in chronic fatigue syndrome

BACKGROUND: Anxiety about illness leading to restriction of activity and physical deconditioning has been hypothesized to contribute to the chronicity of fatigue. Pathological symptom attributions, personality traits, and depression have all been hypothesized to contribute to illness worry. METHODS: We compared 45 chronic fatigue syndrome (CFS) and 40 multiple sclerosis (MS) outpatients using a battery of psychometric instruments comprising the 12-item Illness Worry scale, the Symptom Interpretation Questionnaire (SIQ), the NEO Five-Factor Inventory (NEO-FFI), and a modified version of the SCL-90R Depression scale. RESULTS: There was no difference between the two diagnostic groups on neuroticism, depressive symptoms, as well as the three scales of the SIQ. On the illness worry index, the CFS group had significantly higher scores than the MS group. This difference was due to items tapping vulnerability to illness and the perception that others are not taking their illness seriously. Somatic attributional style, neuroticism, depressive symptoms, and age were all significant predictors of illness worry in both CFS and MS patients. CONCLUSIONS: Somatic attributions, neuroticism, and depression all contribute to illness worry in chronic illness. However, these factors do not account for the higher levels of illness worry in CFS as opposed to MS, which may be due to other specific cognitive and social interactional processes.     

Chronic fatigue syndrome: occupation, medical utilization, and subtypes in a community-based sample

Most studies of chronic fatigue syndrome (CFS) have been based on patients recruited from primary or tertiary care settings. Patients from such settings might not be typical of patients in the general population. The present investigation involved examining individuals with CFS from a community-based study. A random sample of 18,675 respondents in Chicago was first interviewed by telephone. A group of individuals with chronic fatigue accompanied by at least four minor symptoms associated with CFS were given medical and psychiatric examinations. From this sample, a physician review group diagnosed individuals with CFS. Those diagnosed with CFS were subclassified based on a variety of categories, including duration of illness, mode of illness onset, and presence or absence of a stressful life event directly preceding onset. In addition, we examined medical utilization among those diagnosed with CFS, as well as whether individuals with CFS were disproportionately represented in health care professions. Important differences emerged on measures of sociodemographics, symptoms, and functional disability. The implications of these findings and others are discussed.     

Patients' drawings illustrate psychological and functional status in heart failure

OBJECTIVE: The aim of this study was to evaluate whether the heart drawings of patients with heart failure are associated with their psychological, functional, and clinical status. METHODS: Sixty patients with heart failure completed a written questionnaire that included a heart drawing task, measures of psychological functioning, and illness perceptions. RESULTS: Patients drew their heart significantly bigger in height when they depicted their heart with failure as compared with how they depicted their heart before their heart failure. Greater levels of heart-specific anxiety were associated with significantly larger drawings as measured by height and overall area. Compared with those who drew no damage, patients who drew damage had significantly higher levels of depression and more negative beliefs about their illness. Drawings also had a significant relationship with the clinical markers of illness severity, B-type natriuretic peptide level, and sodium level. CONCLUSIONS: Heart drawings of patients with heart failure are associated with important psychological and clinical indicators of health status. Drawings offer an innovative way to understand patients' perceptions of illness and personal models of heart failure.     

The role of illness perceptions in patients with medical conditions

PURPOSE OF REVIEW: In this article we summarize recent investigations into the influence of illness perceptions on outcomes in patients with medical conditions. RECENT FINDINGS: Developments in assessment include the publishing of a new brief scale to assess illness perceptions and the examination of the relationship between patient drawings of their illness and outcomes. Recent studies in primary care highlight the importance of patients' beliefs and emotional responses to their illness as being important in influencing their satisfaction with the consultation, reassurance following negative medical testing and future healthcare use. Recent research shows illness perceptions to have associations with a number of outcomes in chronic illness including self-management behaviours and quality of life. As yet, however, few interventions have been developed designed to change illness perceptions and improve illness outcomes. Emerging areas of research include the application of illness perceptions to mental illness and genetic and risk factor testing. SUMMARY: Research on illness perceptions has confirmed that patients' beliefs are associated with important outcomes in a broadening range of illnesses and risk factor testing. New interventions based on this model have the potential to improve patient outcomes but have yet to be widely developed and applied.     

Identifying physical activity patterns in chronic fatigue syndrome using actigraphic assessment

OBJECTIVE: Changes in physical activity are thought to play an important role in maintaining symptoms in chronic fatigue syndrome (CFS). The aim of this study was to describe intraindividual physical activity patterns in more detail and to identify pervasively passive patients. METHODS: With help of a movement-sensing device, physical activity levels were registered continuously over a 12-day period in 277 CFS patients. Within this registration period, the 10 largest activity peaks were computed. The intensity and duration of these activity peaks and their subsequent rest periods were described and compared to those of 47 healthy controls. In addition, the patients' 12 daily activity scores were used to identify patients who were characterised by low levels of physical activity throughout the registration period. RESULTS: The CFS sample had less intense and shorter activity peaks, while the average rest periods that followed these peaks lasted longer. Approximately one-fourth of the CFS sample differed distinctly from the control group and was labelled as pervasively passive. CONCLUSION: The measurements and classification of actual physical activity levels were found to reduce heterogeneity in the CFS population and therefore could provide the opportunity to optimise behavioural intervention protocols for CFS.     

Family health and characteristics in chronic fatigue syndrome, juvenile rheumatoid arthritis, and emotional disorders of childhood

OBJECTIVE: To compare family health and characteristics in children with chronic fatigue syndrome (CFS), in juvenile rheumatoid arthritis (JRA), and emotional disorders. METHOD: Parents of 28 children and adolescents aged 11 to 18 years with CFS, 30 with JRA, and 27 with emotional disorders (i.e., anxiety and/or depressive disorders) were recruited from specialty clinical settings and completed interviews and questionnaires assessing family health problems, parental mental distress, illness attitudes, and family burden of illness. RESULTS: Parents of children with CFS were significantly more likely than those of children with JRA to report a history of CFS-like illness, high levels of mental distress, and a tendency to experience functional impairment in response to physical symptoms. Families of children with CFS were characterized by significantly greater emotional involvement and reported greater family burden related to the child's illness in comparison with families of children with JRA. CONCLUSIONS: CFS in childhood and adolescence is associated with higher levels of parental CFS-like illness, mental distress, emotional involvement, and family illness burden than those observed in association with JRA, a chronic pediatric physical illness.     

Impact of chronic pain on the spouse: marital, emotional and physical consequences

The effects of chronic illness on marital relationships and the spouses' emotional and physical health were examined in chronic pain patients, their spouses, and a control sample of spouses of diabetic patients. Results indicated that pain patients and their spouses experienced considerable change in marital and sexual satisfaction. Patients with better marital adjustment also reported higher overall pain levels and had more solicitous and maritally satisfied spouses. Spouses' marital adjustment was positively associated with patients' marital satisfaction and spouses' own mood. Spouses' dysphoric mood was related to patients' negative appraisal of the pain experience, spouses' perceived lack of life control, and spouses' marital dissatisfaction. Although spouses of chronic pain patients showed no more physical symptoms than spouses of diabetics, they reported significantly more pain symptoms that were related to elevated levels of depressed mood. The results indicate that not only is chronic pain associated with problems in the marital relationship but heightened distress and physical symptoms in spouses as well. These effects are related less to the existence of a chronic pain problem per se but rather to patients' and spouses' manner of coping with the situation.