Toward a model of social course in chronic illness: the example of chronic fatigue syndrome

Abstract:

Retrospective, narrative accounts of illness experience in chronic fatigue syndrome provide the empirical basis for a preliminary conceptual model of social course in chronic illness. Qualities of distress interact with culturally specific expectations for social life and personal conduct to trigger microsocial processes of marginalization: role constriction, delegitimation, impoverishment, and social isolation.

Marginalizing processes are opposed by acts of resistance initiated by ill individuals and directed toward integration in social worlds. Social distance from the perceived centers of CFS sufferers’ interpersonal worlds expands and contracts with the changing predominance of marginalizing and resisting influences over time. Social course thus consists of successive, bi-directional movements along a ‘continuum of marginality’ by persons living lives with chronic illness.

 

Source: Ware NC. Toward a model of social course in chronic illness: the example of chronic fatigue syndrome. Cult Med Psychiatry. 1999 Sep;23(3):303-31. http://www.ncbi.nlm.nih.gov/pubmed/10572737

 

Review of juvenile primary fibromyalgia and chronic fatigue syndrome

Abstract:

This article reviews the current literature on childhood fibromyalgia and chronic fatigue syndrome. In doing so, it questions assumptions about the presumed nature of the disorders-that they are distinct from each other and are duplicates of their adult counterparts. It also attempts to synthesize the available data to reach some preliminary judgments about these disorders: that fibromyalgia and chronic fatigue syndrome may be related in children and may not be duplicates of the adult disorders; that psychological and psychosocial factors are unlikely contributors to the etiology of these disorders; and that the evidence is increasingly pointing to a role for genetic factors in their etiology. A discussion of the research into treatments for childhood fibromyalgia and chronic fatigue syndrome highlights the lack of well-designed, controlled studies. Finally, directions for future research are offered where results of the current literature are unclear.

 

Source: Breau LM, McGrath PJ, Ju LH. Review of juvenile primary fibromyalgia and chronic fatigue syndrome. J Dev Behav Pediatr. 1999 Aug;20(4):278-88. http://www.ncbi.nlm.nih.gov/pubmed/10475602

 

The effects on siblings in families with a child with chronic fatigue syndrome

Abstract:

Paediatric CFS/ME is a stressor, which affects not only the sufferer but also the whole family. The sibling bond exerts a great influence on all the children in the family. Healthy siblings are often overlooked as attention is focused on the child with CFS/ME or other chronic illness. Individual children react in different ways to serious illness in another sibling by adopting a variety of coping mechanisms. There is a need for health and education professionals to consider the whole family when caring for and working with a child with CFS/ME.

 

Source: Jackson EL. The effects on siblings in families with a child with chronic fatigue syndrome. J Child Health Care. 1999 Summer;3(2):27-32. http://www.ncbi.nlm.nih.gov/pubmed/10451339

 

Chronic fatigue syndrome does exist. Changes of biological parameters are measurable

Abstract:

Chronic fatigue syndrome is a debilitating condition characterised by neurocognitive and somatic symptoms. Although many patients report an infectious onset, there is no unequivocal evidence to support this. The immune system is activated, and the hypothalamic-pituitary-adrenal axis is involved. The aetiology is complex, and its understanding may require modification of our views on ill-health and disease.

 

Source: Evengård B, Komaroff AL. Chronic fatigue syndrome does exist. Changes of biological parameters are measurable. Lakartidningen. 1999 Jun 30;96(26-27):3166-9. [Article in Swedish] http://www.ncbi.nlm.nih.gov/pubmed/10423976

 

Use of formal and informal care among people with prolonged fatigue: a review of the literature

Abstract:

Prolonged fatigue is a common symptom in the community and a common complaint in GPs’ surgeries. The current consensus is that prolonged fatigue is most appropriately managed within primary care but that quality of care is patchy. Diagnosis is difficult and there is no conclusive evidence about effective treatment. This can lead to confusion and controversy among lay people and health professionals alike. Although the value of a positive doctor-patient relationship is emphasized, general practice consultations are frequently experienced as difficult by both parties. Moreover, little is known about how people access other sources of care and information about prolonged fatigue, such as alternative medicine, self-help groups, lay others, and self care, in conjunction with or as an alternative to care from health professionals. This paper reviews the literature on the nature and extent of the problem prolonged fatigue represents for primary care, and on the use of formal and informal care for prolonged fatigue.

Comment in: Fatigue. [Br J Gen Pract. 1999]

 

Source: Elliott H. Use of formal and informal care among people with prolonged fatigue: a review of the literature. Br J Gen Pract. 1999 Feb;49(439):131-4. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1313351/ (Full article)

 

Fibromyalgia, chronic fatigue syndrome, and myofascial pain syndrome

Abstract:

Fibromyalgia was almost completely absent from an urban affluent population compared with poor urban and rural communities. Seventeen percent of Gulf War veterans with soft tissue syndromes had fibromyalgia, a much higher rate than was seen in previous studies of rheumatic disease in the military population. A state of central hyperexcitability in the nociceptive system was reported in fibromyalgia. Altered functioning of the stress-response system has been further documented in fibromyalgia and chronic fatigue syndrome.

Administration of growth hormone to patients with fibromyalgia who have low levels of insulin-like growth factor 1 resulted in improvement in their symptoms and tenderness. An association between chronic fatigue syndrome and initial infections was demonstrated. A correlation between particular immunologic abnormalities and measures of disease severity was documented in chronic fatigue syndrome. Concomitant fibromyalgia in other rheumatic diseases was a major contributor to poor quality of life. A favorable outcome of fibromyalgia in children was reported; the majority of patients improved over 2 to 3 years of follow-up. Treatment of patients with fibromyalgia continues to be of limited success.

 

Source: Buskila D. Fibromyalgia, chronic fatigue syndrome, and myofascial pain syndrome. Curr Opin Rheumatol. 1999 Mar;11(2):119-26. http://www.ncbi.nlm.nih.gov/pubmed/10319215

 

Fibromyalgia syndrome

Abstract:

Fibromyalgia syndrome (FMS) is recognizable syndrome characterized by chronic, diffuse pain, an absence of inflammatory or structural muscloskeletal abnormalities, and a range of symptoms that include fatigue, and sleep and mood disturbances. Physical examination and laboratory testing are unrevealing, except for the presence of pain on palpation of characteristic soft-tissue sites, the tender points.

Despite the recognition of FMS by the World Health Organization, it remains a controversial condition and its existence as a distinct entity remains uncertain. However, the concept of FMS is a useful one, allowing many investigations to be avoided and appropriate advice on treatment to be given. FMS may overlap with symptoms of, and the patient further impaired by, anxiety and depression. The term FMS dose not imply causation and merely describes the most common symptoms.

Many patients with chronic fatigue syndrome(CFS) fulfill the criteria of FMS and represent one end of a spectrum of presentation. Evidence for triggering viral infection and the lower level of serum acylcarnitine, observed in CFS patients, is lacking in the majority of patients with FMS. These findings are suggestive to be distinctively another disorders between FMS and CFS.

 

Source: Matsumoto Y. Fibromyalgia syndrome. Nihon Rinsho. 1999 Feb;57(2):364-9. [Article in Japanese] http://www.ncbi.nlm.nih.gov/pubmed/10078006

 

The importance of orthostatic intolerance in the chronic fatigue syndrome

Abstract:

Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis is a clinically defined syndrome characterized by persistent or relapsing debilitating fatigue for longer than 6 months in the absence of any definable medical diagnosis. The cause of this syndrome is unknown. Symptoms of orthostatic intolerance, such as disabling fatigue, dizziness, diminished concentration, tremulousness, and nausea, are often found in patients with CFS. In this review, we critically evaluate the relationship between orthostatic intolerance and CFS. Particular emphasis is placed on clinical diagnosis, laboratory testing, pathophysiology, and therapeutic management. It is hoped that this review will provide a stimulus for further study of this complex and disabling condition.

 

Source: Schondorf R, Freeman R. The importance of orthostatic intolerance in the chronic fatigue syndrome. Am J Med Sci. 1999 Feb;317(2):117-23. http://www.ncbi.nlm.nih.gov/pubmed/10037115

 

The hypothalamic-pituitary-adrenal stress axis in fibromyalgia and chronic fatigue syndrome

Abstract:

HPA axis abnormalities in FM, CFS, and other stress-related disorders must be placed in a broad clinical context. We know that interventions providing symptomatic improvement in patients with FM and CFS can directly or indirectly affect the HPA axis. These interventions include exercise, tricyclic anti-depressants, and serotonin reuptake inhibitors. There is little direct information as to how the specific HPA axis perturbations seen in FM can be related to the major symptomatic manifestations of pain, fatigue, sleep disturbance, and psychological distress. Since many of these somatic and psychological symptoms are present in other syndromes that exhibit HPA axis disturbances, it seems reasonable to suggest that there may be some relationship between basal and dynamic function of the HPA axis and clinical manifestations of FM and CFS.

 

Source: Crofford LJ. The hypothalamic-pituitary-adrenal stress axis in fibromyalgia and chronic fatigue syndrome. Z Rheumatol. 1998;57 Suppl 2:67-71. http://www.ncbi.nlm.nih.gov/pubmed/10025087

 

The non-specific environmental syndromes MCS (Multiple Chemical Sensitivity), IEI (Idiopathic Environmental Intolerance) and SBS (Sick Building Syndrome)

Abstract:

This review starts with a clinical description of the most common unspecific environmental diseases, such as Multiple Chemical Sensitivities (MCS), Idiopathic Environmental Intolerances (IEI) and Sick Building Syndrome (SBS). These syndromes are very controversial discussed between scientific medicine and “clinical ecology”. In addition, they have fundamental similarities to Chronic Fatigue Syndrome (CFS) and Fibromyalgia. Finally the spectrum of therapeutic approaches is discussed.

 

Source: Csef H. The non-specific environmental syndromes MCS (Multiple Chemical Sensitivity), IEI (Idiopathic Environmental Intolerance) and SBS (Sick Building Syndrome). Fortschr Med. 1998 Nov 30;116(33):18-20, 22, 24. [Article in German] http://www.ncbi.nlm.nih.gov/pubmed/9889460