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Psychosomatics 42:21-28, February 2001
© 2001 The Academy of Psychosomatic Medicine

Victimization in Chronic Fatigue Syndrome and Fibromyalgia in Tertiary Care

A Controlled Study on Prevalence and Characteristics

Boudewijn Van Houdenhove, M.D., Eddy Neerinckx, Ph.D., Roeland Lysens , M.D., Hans Vertommen, Ph.D., Liesbet Van Houdenhove, M.A., Patrick Onghena, Ph.D., René Westhovens, M.D., and Marie-Beatrice D'Hooghe, M.D.

Received June 1, 1999; revised September 23, 1999; accepted June 28, 2000. From the Department of Psychosomatic Rehabilitation, Department of Physical Medicine and Rehabilitation, Department of Rheumatology, University Hospitals, Katholieke Universiteit Leuven; Faculty of Psychology and Educational Sciences, Katholieke Universiteit Leuven; and National Centre for Multiple Sclerosis, Melsbroek, Belgium. Address correspondence and reprint requests to Dr. Boudewijn Van Houdenhove, Department of Psychosomatic Rehabilitation, University Hospitals K.U.Leuven, Weligerveld 1, B-3212 Pellenberg, Belgium; e-mail: Boudewijn.VanHoudenhove{at}uz.kuleuven.ac.be


  ABSTRACT

 
TOP
 ABSTRACT
INTRODUCTION
 METHODS
 RESULTS
 DISCUSSION
 CONCLUSION
 REFERENCES
 
The authors studied the prevalence and characteristics of different forms of victimization in 95 patients suffering from chronic fatigue syndrome (CFS) or fibromyalgia (FM) compared with a chronic disease group, including rheumatoid arthritis (RA) and multiple sclerosis (MS) patients, and a matched healthy control group. The authors assessed prevalence rates, nature of victimization (emotional, physical, sexual), life period of occurrence, emotional impact, and relationship with the perpetrator by a self-report questionnaire on burdening experiences. CFS and FM patients showed significantly higher prevalences of emotional neglect and abuse and of physical abuse, with a considerable subgroup experiencing lifelong victimization. The family of origin and the partner were the most frequent perpetrators. With the exception of sexual abuse, victimization was more severely experienced by the CFS/FM group. No differences were found between healthy control subjects or RA/MS patients, and between CFS and FM patients. These findings support etiological hypotheses suggesting a pivotal role for chronic stress in CFS and FM and may have important therapeutic implications.

Key Words: Chronic Fatigue Syndrome • Fibromyalgia • Victimization

  INTRODUCTION

 
TOP
 ABSTRACT
 INTRODUCTION
METHODS
 RESULTS
 DISCUSSION
 CONCLUSION
 REFERENCES
 
Chronic fatigue syndrome (CFS) is a controversial and medically unexplained chronic illness consisting of debilitating fatigue as well as a variety of other symptoms, including myalgias, postexertion malaise, headaches, mood disturbances, and impaired memory and concentration.1 In rheumatology, a largely overlapping symptom complex has been described under the label of fibromyalgia (FM).2 Both syndromes are at present presumed to be part of a broad category of "functional somatic syndromes" that, despite phenotypical differences, share many similarities.3,4 Although some researchers still favor a dualistic approach,5 many researchers believe that these syndromes are determined by biological, psychological, and social factors that may be divided into predisposing, precipitating, and perpetuating dimensions.1,6

During the past decade, the etiological relationship between FM and a history of victimization has been supported by several studies. Boisset-Pioro et al.7 have reported an association among FM, the frequency of physical and sexual abuse, and the severity of sexual abuse. On the other hand, Taylor et al.8 did not find a higher prevalence of sexual abuse but showed an association with the number of symptoms. More recently, Walker et al.9 demonstrated a manifest association between FM and different forms of victimization, particularly adult physical abuse, and concluded that emotional, physical, and sexual trauma may be important factors in the development and maintenance of FM and associated disability.

Research on the relationship between victimization and CFS is scarce. Ware10 reported from her interviews with CFS patients that "approximately half of the subjects represented their childhood in terms which suggested the presence of ... physical, sexual or verbal abuse, low self-esteem, and chronic tension or fighting in the family." However until now, no systematic psychometric studies of victimization in CFS patients have been performed.

The purpose of the present study is to provide systematic and controlled empirical data on victimization in both CFS and FM patients. We focus on the prevalence of victimization and various qualitative aspects, including the nature of victimization (emotional neglect, emotional abuse, physical abuse, sexual harassment, and sexual abuse), the stage of life at which the victimization occurred, the emotional impact on the patient, and the context in which the victimization happened.


  METHODS

 
TOP
 ABSTRACT
 INTRODUCTION
 METHODS
RESULTS
 DISCUSSION
 CONCLUSION
 REFERENCES
 
Subjects
We recruited the study group through a systematic multidisciplinary screening of chronically fatigued and musculoskeletal pain patients at the general internal medicine and rheumatology clinics of the University Hospitals, Katholieke Universiteit Leuven. After a negative somatic investigation, further screening included effort capacity measurements, psychological testing, and a psychiatric in-depth interview (in that order). Of the 95 consecutive attenders participating in the study, 54 fulfilled CDC-criteria of CFS,11 and 41 ACR-criteria of FM.12

A first control group consisted of 26 recently diagnosed rheumatoid arthritis (RA) patients from the rheumatology clinic and 26 multiple sclerosis (MS) patients from the National Multiple Sclerosis clinic. A second control group of randomly selected participants were free of any major medical or psychiatric condition and matched for gender, age, civil state, and level of education.

Middle-aged, higher-educated women living with a partner formed the majority in all three groups. The study group and the two control groups were not significantly different on any of the demographic variables (Table 1).


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TABLE 1. Demographic characteristics



Assessment
Each subject completed the "Vragenlijst naar Belastende Ervaringen" ("Questionnaire on Burdening Experiences").13 This is a Dutch, 26-item self-report questionnaire, focusing on various life-time burdening experiences. Each experience is scored as follows: "Did it happen to you?" (yes/no); in case of an affirmative answer: "At what age?"; and "To what degree did it affect you?"(1=Not At All to 5=Very Seriously).

For the purpose of this study, we selected the following five items: emotional neglect, emotional abuse, physical abuse, sexual harassment (no physical contact), and sexual abuse. Each item is exemplified on the questionnaire. Emotional neglect is explained as "being often left on your own, abandoned to your fate, not experiencing love/warmth" and/or "taking care of the parents and/or family when being a child"; emotional abuse as "being constantly disparaged, pestered or torn into; being intimidated or wrongfully punished"; physical abuse as "being battered or tortured"; sexual harassment as "unpleasant sexual advances without physical contact"; and sexual abuse as "unwantedly undergoing sexual acts and/or being forced to perform these acts." Furthermore, each item is divided into three contextual levels: the family of origin (e.g., parents, siblings), other family members (e.g., partner, grandparents), and nonfamily members (e.g., schoolteachers).

For the RA/MS and CFS/FM groups, the questionnaire was included with the psychological test battery. The healthy control subjects completed only the questionnaire. Strict anonymity was guaranteed for the control subjects by adding a postage-paid envelope, with no need to fill in name or personal address. All of the patients' answers were kept confidential.

Data Analysis
We performed descriptive statistics, frequency analyses and statistical tests using SAS.14 To test the relationship between victimization and diagnosis, Fisher's exact test was used. Prevalence differences between CFS/FM patients and control groups and between CFS and FM patients were calculated using Pearson's chi square. We evaluated differences in emotional impact by using Kruskal-Wallis chi square. Bonferroni corrections were used for multiple comparisons.


  RESULTS

 
TOP
 ABSTRACT
 INTRODUCTION
 METHODS
 RESULTS
DISCUSSION
 CONCLUSION
 REFERENCES
 
Prevalance of Victimization and Stages of Life
The general prevalence rate of (one or another form of) victimization was higher in CFS/FM (64.1%) than in RA/MS patients (42.3%) ({chi}2= 16.58; df=3; P=0.001) and healthy control subjects (49.4%) ({chi}2=18.85; df=3; P=0.000) (Table 2). There was no significant difference between the prevalence rates of RA/MS patients and healthy controls.


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TABLE 2. Prevalence of victimization with group comparisons



According to Leserman et al.,15 we separated age into the following three categories: Childhood Victimization Only (<14 years), Adult Victimization Only, and Lifelong Victimization. Our findings indicate that significantly more CFS/FM patients belong to the "lifelong" group ({chi}2= 20.11; df=2; P=0.000) (Table 3).


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TABLE 3. Prevalence of victimization during stages of life with group comparisons



Prevalence of Different Forms of Victimization
In CFS/FM patients, the prevalence rate of emotional neglect is 48.4% (versus 30.8% in RA/MS patients and 28.4% in healthy control subjects); emotional abuse is 37.9% (versus 13.5% and 14.7%); physical abuse is 23.2% (versus 11.5% and 7.4%); sexual harassment is 20.0% (versus 11.5% and 22.1%); and sexual abuse is 9.5% (versus 7.7% and 5.3%).

Compared with RA/MS patients, CFS/FM patients report more emotional neglect ({chi}2=4.29; df=1; P=0.019) and emotional abuse ({chi}2=9.69; df=1; P=0.002). Compared with healthy control subjects, CFS/FM patients report more emotional neglect ({chi}2=8.03; df=1; P=0.005), emotional abuse ({chi}2=13.14; df=1; P=0.000), and physical abuse ({chi}2=9.16; df=1; P=0.002). Sexual harassment and sexual abuse do not show significant differences in prevalence rates among the three groups (Table 4). Furthermore, prevalence rates of RA/MS patients and healthy control subjects are not significantly different for any form of victimization.


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TABLE 4. Group comparisons of prevalences of different forms of victimization (P values)



Emotional impact of Different Forms of Victimization
The three groups show significant differences in experienced impact of emotional neglect ({chi}2=11.05; df=2; P=0.004), emotional abuse ({chi}2=10.60; df=2; P=0.005), physical abuse ({chi}2=8.56; df=2; P=0.014), and sexual harassment ({chi}2=7.54; df=2; P=0.023). The impact of sexual abuse, however, does not differ among the groups (Table 5). Furthermore, RA/MS patients and healthy control subjects do not show significant differences in emotional impact of any form of victimization.


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TABLE 5. Emotional impact of different forms of victimization with group comparisons



Context of Victimization
With regard to the family of origin, CFS/FM patients report more emotional neglect ({chi}2=7.61; df=1; P=0.006), emotional abuse ({chi}2=10.06; df=1; P=0.001), and physical abuse ({chi}2=4.69; df=1; P=0.030) as compared with RA/MS patients. Likewise CFS/FM patients report more emotional neglect ({chi}2=9.32; df=1; P=0.002), emotional abuse ({chi}2=16.59; df=1; P=0.000), and physical abuse ({chi}2=4.34; df=1; P=0.037) compared with healthy control subjects.

CFS/FM patients report more emotional abuse by other family members compared with RA/MS patients ({chi}2=6.66; df=1; P=0.010) and healthy control subjects ({chi}2=7.08; df=1; P=0.008). In 69% of cases, the partner is designated to be the perpetrator.

Finally, with regard to nonfamily members, CFS/FM patients report more emotional neglect ({chi}2=4.05; df=1; P=0.044) and physical abuse ({chi}2=5.69; df=1; P=0.017) compared with healthy control subjects (Table 6).


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TABLE 6. Group comparisons between victimization in the family of origin, other family members, and nonfamily members (P values)



CFS vs. FM
No differences in the prevalence of any form of victimization, emotional impact or contextual factors are found between CFS and FM subgroups.


  DISCUSSION

 
TOP
 ABSTRACT
 INTRODUCTION
 METHODS
 RESULTS
 DISCUSSION
CONCLUSION
 REFERENCES
 
Methodological Considerations
Research on victimization remains a hazardous challenge, especially with regard to validity and reliability.16–19 First, questionnaires as well as structural interviews may be biased by the subject's unconscious repression, conscious suppression, or "false memories." Second, data may be influenced by differences in definitions of victimization, age and gender grouping, patient selection procedures, and the possibly confounding effects of genetic factors. Third, subjective factors such as "effort after meaning" and previous psychotherapeutic experiences may profoundly impact disclosure. All these sources of bias may explain why prevalence rates of victimization in medically unexplained syndromes vary considerably (e.g., from 1% lifetime physical abuse20 to 77% childhood sexual abuse).21

In the present study, we were moreover confronted with a particular methodological problem. The Dutroux-pedophile affair in Belgium obliged us to take account of a possible attitude change towards disclosure of victimization. Therefore, we decided to use a chronic medical disease and a healthy control group in order to obtain baseline scores within the sociocultural context at the time of the study. This option eventually forced us to decide in favor of a self-report questionnaire because interviewing a large healthy control group was not feasible.

The Importance of Lifelong Victimization
Besides the impressive prevalence of victimization experiences in CFS/FM patients, the most striking finding of this study is the higher prevalence of lifelong victimization, particularly in the family of origin and by the partner. This suggests that many CFS/FM patients remained entangled in burdening and threatening relationships since their early childhood, whereas a majority of victimized control subjects could probably benefit from "protective factors"22 that made them resilient enough to exchange a difficult past for a safer and more gratifying future.

Which Types of Victimization Play a Role?
CFS/FM patients show, in comparison with control subjects, a significantly higher prevalence of emotional abuse as well as physical abuse. On the other hand, the prevalence of sexual abuse is not significantly different between CFS/FM patients and control subjects, and moreover appears to be rather low.

In victimization, emotional neglect and abuse are often underestimated. These forms of victimization are not particularly sensational and, therefore, more difficult to detect; although the effects may be as detrimental as those of physical and sexual abuse.22,23 Karol et al.24 found emotional abuse during childhood and/or adulthood in 23% of male and 36% of female patients consulting at a back pain outpatient clinic. Other studies reported 44% musculoskeletal pain clinic patients,25 and 15%–23% of people with gastrointestinal complaints in a general population sample26 to be emotionally abused as children. Our findings of 48.4% emotional neglect and 37.9% emotional abuse stress the importance of these aspects of victimization in CFS/FM patients.

Few research studies have addressed physical abuse as well. Results vary between 11% and 43% in musculoskeletal pain patients,7,24 3% and 13% in gastrointestinal pain patients,26,27 and 27% and 54% in pelvic pain patients.28 We found that 23.2% of CFS/FM patients had been physically abused, a percentage falling within the above-mentioned ranges.

In our study, no significant differences in prevalences of sexual harassment and sexual abuse between patients and control subjects was found. Our results may support the hypothesis of previous research that sexual victimization experiences are mostly found in patients with gastrointestinal symptoms26,27,29 and pelvic pain21,28,30–34 because of the close anatomical and emotional link of the body parts involved. Nonetheless, a history of sexual abuse has also been shown in recent research on chronic musculoskeletal pain.25,35–37

Victimization as a Global Experience
Taking the above into account, it can be hypothesized that not one particular form of abuse is most likely to be pathogenic, but rather victimization is a global experience of being helpless and powerless in confrontation with a longlasting situation of neglect, violence, chaos, unpredictability and inadequate family limits (e.g., the "parentified" child in a "multiproblem family"18). Our results indeed show that a large subgroup of CFS/FM patients not only have lived (and still live) under such conditions but also have great difficulty in reducing the emotional impact of such conditions. Our findings are in accordance with our clinical and psychotherapeutical work in which we frequently encounter these patients' poor self-esteem and basic security (not seldom masked by self-sufficiency and pseudo-independence), their lack of limits on several domains of functioning (e.g., reflected by exaggerated self-sacrificing tendencies), and their inner unrest with the feeling of having to fight a permanent, undefined threat.38 Recent prospective research has similarly demonstrated the detrimental effects of a perceived lack of parental caring on long-term health status.39

Possible Pathogenic Mechanisms
The relationship between victimization and CFS/FM may be mediated by a complex interaction of several physiological and psychological mechanisms. From a psychological point of view, abuse-related negative affectivity,40 "pain-proneness,"41,42 attachment problems,42,43 and alexithymia44 may increase vulnerability to chronic fatigue and musculoskeletal pain via somatization tendencies, physiological concomitants of sympathetic arousal (including chronic sleep problems, hyperventilation, and muscle hypertension), as well as somatic hypervigilance,45 altered pain perception,46 and the burden of an overactive lifestyle that has to regulate inner tension and compensate for low self-esteem.47,48 Furthermore, the chronic stress of adult victimization (especially within the marital relationship) may be an important cofactor in the precipitation of symptoms.6,9,10 Finally, once symptoms have developed, previous or ongoing victimization may be associated with ineffective coping styles that may lead to pathological illness behavior, various forms of secondary gain, dysfunctional health care-seeking behavior, medical overconsumption (with iatrogenic risks), more severe disability, and psychiatric comorbidity such as anxiety, depression, and substance use disorders.19,49–51

In physiological terms, Selye's model of the General Adaptation Syndrome52 predicts that chronic burdening living conditions may eventually end in complete exhaustion. Recent etiological models on CFS and FM indeed point to hypothalamo-pituitary-adrenal (HPA)-axis disturbances,53,54 that could reflect a "biopsychic crash" in the stress-response system. Moreover, neurobiologists suggest that early childhood abuse may profoundly influence the maturation of this stress response system, causing limited stress tolerance.55 On the other hand, pioneering animal research has recently demonstrated that maternal care may definitely influence gene expression of vital components of the system, such as corticotropin releasing factor (CRF) and the hippocampal glucocorticoid receptor.56 According to influential pain researchers, psychosocial stress may foster chronification of pain via HPA-axis dysregulation,57,58 or neural sensitization processes.59 Similar hypotheses have been formulated with regard to other functional somatic syndromes such as irritable bowel syndrome60,61 and multiple chemical intolerance.62 Likewise, research has found that chronic life stress may alter sympathetic, neuroendocrine, and immune responsivity to an acute psychological stressor,63 and increase susceptibility to infections.64

Therapeutic Implications
Most clinicians agree that CFS and FM will continue to be frustrating conditions from a therapeutic point of view, despite research reports of substantial improvements using cognitive-behavior therapy and graded exercise programs.1 Our findings show that CFS and FM may remain (at least in part) frustrating because a substantial subgroup of patients may need a more comprehensive therapeutic approach, including experiential/psychodynamic and systemic psychotherapy, and/or adequate psychopharmacological support.38

Limitations
Although our study is the first to provide controlled evidence for the high prevalence and impact of victimization in CFS and FM patients, several methodological restrictions should be considered. First, the results should be interpreted within the shortcomings inherent to a retrospective design. Second, we used a Dutch self-report questionnaire that has not been validated according to international standards. Third, although we used a chronic disease and a healthy control group, the confounding effects of health care-seeking-behavior cannot be completely ruled out by this type of study. Fourth, not all CFS/FM patients report victimization experiences, which makes their specific role in the etiology of the syndromes highly improbable. Finally, because this study was carried out in a tertiary care CFS/FM sample, one should be cautious to generalize the results to patients seen in other medical settings or the general population.


  CONCLUSION

 
TOP
 ABSTRACT
 INTRODUCTION
 METHODS
 RESULTS
 DISCUSSION
 CONCLUSION
REFERENCES
 
Despite the above limitations, our data suggest that victimization—particularly lifelong emotional neglect and abuse and physical abuse—may be one of the chronic stressors that play a predisposing, precipitating, and/or perpetuating role in CFS as well as in FM. Consequently, our findings add to the growing evidence that both syndromes should be considered as "stress-related." Our findings also suggest that CFS or FM patients should undergo a psychosocial screening in which the possibility of victimization should be tactfully questioned in order to be able to provide adequate therapeutic help.


  ACKNOWLEDGMENTS

 
The study was supported from a grant of the Scientific Research Fund Vlaanderen.


  REFERENCES

 
TOP
 ABSTRACT
 INTRODUCTION
 METHODS
 RESULTS
 DISCUSSION
 CONCLUSION
 REFERENCES
 

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