Using Multiple Sources of Knowledge to Reach Clinical Understanding of Chronic Fatigue Syndrome

Abstract

PURPOSE Chronic fatigue syndrome (CFS), or myalgic encephalitis (ME), is a contentious condition and often a diagnosis of exclusion. Current policy in the United Kingdom recommends management in primary care. We explored how patients with CFS/ME and family physicians understand this condition and how their understanding might affect the primary care consultation. METHODSWe undertook a qualitative study with patients and family physicians from North West England participating in a primary care-based randomized controlled trial (FINE Trial). Data were collected through purposive sampling and in-depth semistructured interviews with 24 patients and 14 family physicians. We analyzed interview transcripts using constant comparison methods. RESULTSFamily physicians access social and cultural knowledge to reach a clinical understanding of CFS/ME and its management. Patients recognize the diffi culties family physicians encounter in understanding their symptoms and access similar nonclinical sources of information. We suggest that both patients and physicians use biomedical discourse within the consultation: the physician to maintain the position as an expert, the patient to engage the physician. CONCLUSIONSFamily physicians obtain information about CFS/ME from their nonprofessional world, which they incorporate into their professional realm. Patients and physicians describe the use of the discourse of science within consultations about CFS/ME. This form of shared understanding could lead to a positive collaborative interaction. Family physicians need a biomedical, evidence-based knowledge about CFS/ME. There is potential to use the rich knowledge base that patients can bring to consultations in training initiatives directed at family physicians. Ann Fam Med 2008;6:340-348. DOI: 10.1370/afm.867. INTRODUCTIONC hronic fatigue syndrome (CFS), or myalgic encephalitis (ME), is a chronic incapacitating illness that leads to individual disability 1 and lost productivity. 2,3 The annual economic impact of chronic fatigue syndrome in the United States is estimated to be $9.1 billion in lost productivity, not including medical costs or disability payments. The average family affected by CFS/ME loses $20,000 a year in wages and earnings.1 Patients usually experience multiple additional symptoms, 4 commonly with comorbid psychiatric disorders. 5 Prognosis is poor 6 and is accompanied by functional impairment and reduced quality of life. 7 Persons with CFS/ME are high users of health care services and more likely than others to be out of work. 8 The diagnosis is surrounded by controversy. 9 Most researchers now accept the view that CFS/ME is multifactorial and distinguish among factors that predispose, precipitate, and perpetuate the condition. In 2002 the UK Department of Health recommended that CFS/ME should be managed wherever possible in the community by family physicians supported by local multidisciplinary teams. 11 In the absence of a fi rm evidence base for treatment of CFS/ME in primary care, this recommendation was ...

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