Academic journal article British Journal of Occupational Therapy

Chronic Fatigue Syndrome and Occupational Disruption in Primary Care: Is There a Role for Occupational Therapy?

Academic journal article British Journal of Occupational Therapy

Chronic Fatigue Syndrome and Occupational Disruption in Primary Care: Is There a Role for Occupational Therapy?

Article excerpt


Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ ME) is a fluctuating and heterogeneous illness of uncertain aetiology (CFS/ME Working Group 2002), which can cause significant disability in terms of the effect upon the person's physical, cognitive, affective and spiritual aspects of occupational performance (Canadian Association of Occupational Therapists [CAOT] 1997). The prognosis for those who develop CFS/ME is generally considered to be poor and people may be affected for less than 2 years or remain ill for several decades, but 'full recovery after symptoms have persisted for more than 5 years is rare' (CFS/ME Working Group, p7). Subsequently, the person's ability to engage in his or her chosen occupations may be challenged further by the physical, cultural, social and institutional (CAOT 1997) environments in which the person resides. Many of the implications of experiencing CFS/ ME will be similar to those of any other chronic illness; however, people with CFS/ME have had to cope with the additional burden of the stigma and controversy with which the condition has been surrounded (Broom and Woodward 1996, Cooper 1997, Millen et al 1998, Saltzein et al 1998, Ware 1999, Hart and Grace 2000, Jason et al 2002).

The experience of CFS/ME will, therefore, affect the person's ability to perform his or her chosen or necessary occupations, and this may be either temporary or permanent. Whiteford (2000) used the term 'occupational disruption' to describe a state of impaired performance, which usually resolves itself given supportive conditions. However, if this disruption is not resolved then occupational dysfunction may result in permanent deficits in occupational performance (Whiteford 2000). Cox and Findley (1998) have described four levels of disruption to functioning that people with CFS/ME may experience: mild, moderate, severe or very severe. These descriptions fit well with the concept of occupational disruption (Whiteford 2000). However, they do not indicate if the disruption to functioning is short term or more permanent, as in occupational dysfunction (Whiteford 2000).

People who are forced to adjust to the chronic nature of CFS/ME therefore experience a detrimental impact on their identity, personal causation, self-efficacy, habits, roles, interests and values (Kielhofner 2002). This may lead to a secondary disability in the form of role constriction and imbalance, a poor quality of life and social isolation associated with occupational dysfunction. A number of research studies have found greater levels of disability in people with CFS/ME seen in secondary and tertiary services and in those people who belong to an ME support group than in those seen in primary care (McDonald et al 1993, Pawlikowska et al 1994, Euba et al 1996, Prins et al 2000, Ridsdale et al 2001). Perhaps the poor prognosis associated with the duration of the condition (CFS/ME Working Group 2002) can, in part, be explained by occupational dysfunction.

It would clearly be in the interests of the individual and the whole National Health Service (NHS) to minimise occupational disruption by means of early intervention in primary care and, where possible, to prevent the occupational dysfunction that may well be seen once the person with CFS/ME finally enters appropriate tertiary services.

Literature review

Management of CFS/ME in primary care

Diagnosis and treatment strategies by general practitioners (GPs) for CFS/ME have been found to vary considerably throughout primary care (Fitzgibbon et al 1997, Steven et al 2000, Bowen et al 2005). Many GPs have been reported to be dissatisfied with the quality of care that they did offer for CFS/ME and some felt that nothing could be done (Fitzgibbon et al 1997, Bazelmans et al 1999). It has also been suggested that the beliefs of the GP and the quality of the therapeutic relationship have been essential in receiving a diagnosis of CFS/ME and subsequent access to secondary/tertiary services and sickness benefits (Cooper 1997, Ware 1999, Lehman et al 2002, Bowen et al 2005). …

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