Chronic fatigue syndrome: a qualitative investigation of patients’ beliefs about the illness

Abstract:

The chronic fatigue syndrome is a disabling chronic condition of uncertain cause. Previous studies have found that patients seen in hospital clinics with the syndrome often strongly believe that their illness is physical in nature and minimize the role of psychological and social factors. There is also evidence that patients cope by avoiding activity. However, almost all of these studies have assessed illness beliefs only by questionnaire.

The aim of this study was to explore the nature and origin of illness beliefs in more detail using in-depth interviews and a qualitative analysis of patient responses. Sixty-six consecutive referrals meeting Oxford criteria for chronic fatigue syndrome were recruited. Analysis of responses indicated that, whereas the most commonly described explanation for the illness was a physical one, more than half the patients also believed “stress” had played a role. Patients believed that they could partially control the symptoms by reducing activity but felt helpless to influence the physical disease process and hence the course of the illness.

Patients reported that they had arrived at these beliefs about the illness after prolonged reflection on their own experience combined with the reading of media reports, self help books, and patient group literature. The views of health professionals played a relatively small role. There is potentially a considerable opportunity to help patients arrive at a wider and more enabling explanation of their illness when they first present to primary care.

 

Source: Clements A, Sharpe M, Simkin S, Borrill J, Hawton K. Chronic fatigue syndrome: a qualitative investigation of patients’ beliefs about the illness. J Psychosom Res. 1997 Jun;42(6):615-24. http://www.ncbi.nlm.nih.gov/pubmed/9226609

 

The relation of sleep difficulties to fatigue, mood and disability in chronic fatigue syndrome

Abstract:

The relationship of sleep complaints to mood, fatigue, disability, and lifestyle was examined in 69 chronic fatigue syndrome (CFS) patients without psychiatric disorder, 58 CFS patients with psychiatric disorder, 38 psychiatric out-patients with chronic depressive disorders, and 45 healthy controls. The groups were matched for age and gender.

There were few differences between the prevalence or nature of sleep complaints of CFS patients with or without current DSM-IIIR depression, anxiety or somatization disorder. CFS patients reported significantly more naps and waking by pain, a similar prevalence of difficulties in maintaining sleep, and significantly less difficulty getting off to sleep compared to depressed patients.

Sleep continuity complaints preceded fatigue in only 20% of CFS patients, but there was a strong association between relapse and sleep disturbance. Certain types of sleep disorder were associated with increased disability or fatigue in CFS patients. Disrupted sleep appears to complicate the course of CFS. For the most part, sleep complaints are either attributable to the lifestyle of CFS patients or seem inherent to the underlying condition of CFS. They are generally unrelated to depression or anxiety in CFS.

 

Source: Morriss RK, Wearden AJ, Battersby L. The relation of sleep difficulties to fatigue, mood and disability in chronic fatigue syndrome. J Psychosom Res. 1997 Jun;42(6):597-605. http://www.ncbi.nlm.nih.gov/pubmed/9226607

 

The quality of life of persons with chronic fatigue syndrome

Abstract:

This descriptive study used a between-methods triangulation design to analyze the multiple dimensions of quality of life in persons with chronic fatigue syndrome (CFS). This method, which refers to the combination of both quantitative and qualitative methods in the same study, allowed the authors to obtain more comprehensive and robust data than could be obtained by either method alone.

A convenience sample of 110 persons with CFS completed the quality of life index and CFS questionnaire, and a subset of 22 persons were interviewed regarding their lived experience with CFS.

Overall scores on the quality of life index were significantly lower in CFS than for other chronic illness groups. Subjects reported the lowest quality of life scores in health and functioning domain. In depth interviews provided a more complete understanding of the quality of life in CFS and further explained the low ratings that were found on the quality of life index. The findings suggest that quality of life is particularly and uniquely disrupted in CFS.

 

Source: Anderson JS, Ferrans CE. The quality of life of persons with chronic fatigue syndrome. J Nerv Ment Dis. 1997 Jun;185(6):359-67. http://www.ncbi.nlm.nih.gov/pubmed/9205421

 

Chronic parvovirus B19 infection resulting in chronic fatigue syndrome: case history and review

Abstract:

The spectrum of disease caused by parvovirus B19 has been expanding in recent years because of improved and more sensitive methods of detection. There is evidence to suggest that chronic infection occurs in patients who are not detectably immunosuppressed.

We report the case of a young woman with recurrent fever and a syndrome indistinguishable from chronic fatigue syndrome. After extensive investigation, we found persistent parvovirus B19 viremia, which was detectable by polymerase chain reaction (PCR) despite the presence of IgM and IgG antibodies to parvovirus B19.

Testing of samples from this patient suggested that in some low viremic states parvovirus B19 DNA is detectable by nested PCR in plasma but not in serum. The patient’s fever resolved with the administration of intravenous immunoglobulin.

 

Source: Jacobson SK, Daly JS, Thorne GM, McIntosh K. Chronic parvovirus B19 infection resulting in chronic fatigue syndrome: case history and review. Clin Infect Dis. 1997 Jun;24(6):1048-51. http://cid.oxfordjournals.org/content/24/6/1048.long (Full article)

 

Antimuscle and anti-CNS circulating antibodies in chronic fatigue syndrome

Abstract:

 

Chronic fatigue syndrome (CFS) patients suffer from disabling physical and mental fatigue. Circulating autoimmune antibodies may produce symptoms of muscular fatigue by reacting with acetylcholine receptors or calcium binding channels. They can also produce mental status changes by reacting with central nervous system (CNS) antigens. We thoroughly investigated the presence of circulating antimuscle and anti-CNS antibodies in 10 CFS patients and 10 controls. We were unable to detect any pathogenic antibodies.

 

Source: Plioplys AV. Antimuscle and anti-CNS circulating antibodies in chronic fatigue syndrome. Neurology. 1997 Jun;48(6):1717-9. http://www.ncbi.nlm.nih.gov/pubmed/9191795

 

Chronic pain and fatigue syndromes: overlapping clinical and neuroendocrine features and potential pathogenic mechanisms

Abstract:

Patients with unexplained chronic pain and/or fatigue have been described for centuries in the medical literature, although the terms used to describe these symptom complexes have changed frequently. The currently preferred terms for these syndromes are fibromyalgia and chronic fatigue syndrome, names which describe the prominent clinical features of the illness without any attempt to identify the cause.

This review delineates the definitions of these syndromes, and the overlapping clinical features. A hypothesis is presented to demonstrate how genetic and environmental factors may interact to cause the development of these syndromes, which we postulate are caused by central nervous system dysfunction. Various components of the central nervous system appear to be involved, including the hypothalamic pituitary axes, pain-processing pathways, and autonomic nervous system. These central nervous system changes lead to corresponding changes in immune function, which we postulate are epiphenomena rather than the cause of the illnesses.

 

Source: Clauw DJ, Chrousos GP. Chronic pain and fatigue syndromes: overlapping clinical and neuroendocrine features and potential pathogenic mechanisms. Neuroimmunomodulation. 1997 May-Jun;4(3):134-53. http://www.ncbi.nlm.nih.gov/pubmed/9500148

 

Chronic fatigue syndrome and occupational health

Abstract:

Chronic fatigue syndrome (CFS) is a controversial condition that many occupational physicians find difficult to advise on. In this article we review the nature and definition of CFS, the principal aetiologic hypotheses and the evidence concerning prognosis. We also outline a practical approach to patient assessment, diagnosis and management. The conclusions of this review are then applied to the disability discrimination field. The implications of the new UK occupational health legislation are also examined. Despite continuing controversy about the status, aetiology and optimum management of CFS, we argue that much can be done to improve the outcome for patients with this condition. The most urgent needs are for improved education and rehabilitation, especially in regard to employment. Occupational physicians are well placed to play an important and unique role in meeting these needs.

 

Source: Mounstephen A, Sharpe M. Chronic fatigue syndrome and occupational health. Occup Med (Lond). 1997 May;47(4):217-27. http://occmed.oxfordjournals.org/content/47/4/217.long (Full article)

 

Blunted serotonin-mediated activation of the hypothalamic-pituitary-adrenal axis in chronic fatigue syndrome

Abstract:

We examined 5HT1a-mediated ACTH release in patients with chronic fatigue syndrome (CFS) using a between-subjects design. Patients attending a specialist outpatient clinic for CFS, who fulfilled CDC criteria, together with age- and sex-matched healthy comparison subjects, were recruited. Subjects had a cannula inserted in a forearm vein at 0830 h and were allowed to relax until 0900 h, when baseline bloods for ACTH and cortisol were drawn.

They were then given ipsapirone 20 mg PO and further blood for hormone estimation was taken at +30, +60, +90, +120 and +180 min. Baseline ACTH and cortisol levels did not differ between the two groups. Release of ACTH (but not cortisol) in response to ipsapirone challenge was significantly blunted in patients with CFS. We conclude that serotonergic activation of the hypothalamic-pituitary-adrenal axis is defective in CFS. This defect may be of pathophysiological significance.

 

Source: Dinan TG, Majeed T, Lavelle E, Scott LV, Berti C, Behan P. Blunted serotonin-mediated activation of the hypothalamic-pituitary-adrenal axis in chronic fatigue syndrome. Psychoneuroendocrinology. 1997 May;22(4):261-7. http://www.ncbi.nlm.nih.gov/pubmed/9226729

 

Chronic fatigue syndrome. A practical guide to assessment and management

Abstract:

Chronic fatigue and chronic fatigue syndrome (CFS) have become increasingly recognized as a common clinical problem, yet one that physicians often find difficult to manage. In this review we suggest a practical, pragmatic, evidence-based approach to the assessment and initial management of the patient whose presentation suggests this diagnosis. The basic principles are simple and for each aspect of management we point out both potential pitfalls and strategies to overcome them.

The first, and most important task is to develop mutual trust and collaboration. The second is to complete an adequate assessment, the aim of which is either to make a diagnosis of CFS or to identify an alternative cause for the patient’s symptoms. The history is most important and should include a detailed account of the symptoms, the associated disability, the choice of coping strategies, and importantly, the patient’s own understanding of his/her illness. The assessment of possible comorbid psychiatric disorders such as depression or anxiety is mandatory.

When the physician is satisfied that no alternative physical or psychiatric disorder can be found to explain symptoms, we suggest that a firm and positive diagnosis of CFS be made.

The treatment of CFS requires that the patient is given a positive explanation of the cause of his symptoms, emphasizing the distinction among factors that may have predisposed them to develop the illness (lifestyle, work stress, personality), triggered the illness (viral infection, life events) and perpetuated the illness (cerebral dysfunction, sleep disorder, depression, inconsistent activity, and misunderstanding of the illness and fear of making it worse).

Interventions are then aimed to overcoming these illness-perpetuating factors. The role of antidepressants remains uncertain but may be tried on a pragmatic basis. Other medications should be avoided. The only treatment strategies of proven efficacy are cognitive behavioral ones. The most important starting point is to promote a consistent pattern of activity, rest, and sleep, followed by a gradual return to normal activity; ongoing review of any ‘catastrophic’ misinterpretation of symptoms and the problem solving of current life difficulties.

We regard chronic fatigue syndrome as important not only because it represents potentially treatable disability and suffering but also because it provides an example for the positive management of medically unexplained illness in general.

 

Source: Sharpe M, Chalder T, Palmer I, Wessely S. Chronic fatigue syndrome. A practical guide to assessment and management. Gen Hosp Psychiatry. 1997 May;19(3):185-99. http://www.ncbi.nlm.nih.gov/pubmed/9218987

 

Chronic fatigue syndrome: sufferers’ evaluation of medical support

Abstract:

In response to reports of negative cooperation between sufferers of chronic fatigue syndrome (CFS) and their doctors, semi-structured interviews were conducted with sufferers from two different patient samples.

Satisfaction with support received and with medical professionals in general was low. Sufferers complained about insufficient informational as well as emotional support from their doctors, and as a consequence most opted for alternative or complementary forms of treatment.

In addition, disagreements over illness aetiology and treatment precluded effective cooperation. If satisfaction and compliance are to improve, sufferers will need more information about CFS and more support.

 

Source: Ax S, Gregg VH, Jones D. Chronic fatigue syndrome: sufferers’ evaluation of medical support. J R Soc Med. 1997 May;90(5):250-4. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1296257/ (Full article)