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Myalgic encephalomyeltitis/chronic fatigue syndrome: rehabilitation through activity management, stress management and exercise therapy

H133A050008. The opinions contained in this publication are those of the authors and do not necessarily reflect those of CIRRIE or the Department of Education. Introduction In the name 'Chronic Fatigue Syndrome' (CFS), 'chronic' refers to the long duration of the illness; 'fatigue' indicates the presence of persistent or relapsing debilitating fatigue, and 'syndrome' is used to indicate that the illness encompasses a combination of signs and symptoms which are indicative of a particular disease. From our current understanding of CFS pathophysiology and psychopathology, it is concluded that CFS represents the combination of both physiologic and psychological impairments (van Middendorp et al. 2001). It is becoming increasingly apparent that CFS is not an appropriate name for this severely underestimated illness. Indeed, fatigue is not at all disease-specific, and in many cases it is not the most debilitating symptom either. Myalgic encephalomyelitis (ME) is frequently advocated by patient support groups, but given the lack of evidence in support of central nervous system inflammation it is not an appropriate alternative. In the present manuscript we will use ME/CFS to acknowledge the lack of an appropriate name. ME/CFS patients experience a wide variety of symptoms, including musculoskeletal pain, fatigue, impairments in short-term memory, sore throat, tender lymph nodes, sleep disturbances, headache, and post-exertional malaise. In general, rehabilitation of ME/CFS patients aims at reducing the level of fatigue and associated symptoms; to increase the level of activity; and to improve quality of life (Reid et al. 2000). Although the goals for rehabilitation-1-in people with ME/CFS seem to be straightforward, rehabilitation practice is not. Many experienced clinicians struggle to implement basic rehabilitation principles when treating people with ME/CFS. Therefore, the present manuscript aims at providing basic information required to apply rehabilitation to ME/CFS sufferers. Firstly, we will briefly discuss the diagnostic criteria for ME/CFS. In the second part of the manuscript, the reader is provided with a summary of the main characteristics of ME/CFS pathophysiology. We will focus on those issues that are of prime importance to rehabilitation in those with ME/CFS (e.g. malfunctioning of the body defense system, the exhausted stress response system as well as psychological issues). We will use our current understanding of the illness to provide guidelines for applying rehabilitation to those with ME/CFS. Treatment options like exercise therapy and activity (self-)management will be introduced in the context of ME/CFS. Finally, we will discuss the fact that rehabilitation should not be …