Journal of IiME Volume 1 Issue 1 Dr Vance Spence & Dr Neil Abbot ME/CFS: a research and clinical conundrum This presentation was given at the ME research UK Colloqium in 2003. My role is to provide an overview of the difficulties surrounding the illness, especially for those of you who are coming fresh to the topic from other scientific areas and specialties. One of our aims is to bring together experts from a variety of disciplines, some with little or no experience of ME/CFS, as we attempt to energise research into this condition with new ideas and novel approaches to solving its inherent problems. The most widely-used definition of “Chronic Fatigue Syndrome” is that developed in 1994 by a consensus conference: the CDC-1994 (Fukuda et al., 1994) definition. This was developed in response to criticisms that previous definitions (including the CDC-1988) were too restrictive. It requires the presence of chronic fatigue of six months duration which is persistent or relapsing, of new or definite onset, not substantially alleviated by rest, not the result of ongoing exertion, resulting in a substantial reduction in activities, and leading to substantial functional impairment. In addition, at least four of the following are required: sore throat, cognitive symptoms, tender lymph nodes, muscle pain, multi-joint pain, headaches, unfreshing Figure 1 Australia (Lloyd et al., 1990) CFS “Oxford Criteria”, UK (Sharpe et al., 1991) CFS World Health Organisation, 1994 (non-clinical) US Centers for Disease Control and Preventation (Fukuda et al., 1994) CFS “Canadian” Expert Consensus Clinical Case Definition for ME/CFS, 2003 Diagnostic criteria (adults) for “CFS-like” illness 1988–2003 London (Dowsett et al., 1990) ME US Centers for Disease Control and Prevention (Holmes et al., 1988) CFS Previous literature Epidemic Neuromyasthenia (Parish, 1978) Myalgic Encephalomyelitis (Acheson, 1959) Epidemic Neuromyasthenia (Henderson & Shelokov, 1959) Invest in ME Charity Nr 1114035 www.investinme.org sleep and post-exertional malaise. Cognitive or neuropsychiatric symptoms may be present, but the definition excludes clinically important medical conditions such as melancholic depression, substance abuse, bipolar disorder, psychosis and eating disorders. Some would argue that I could just mention this definition and sit down again; but in fact it is part of the problem, and it examining why that is so. As you can see, the definition relies on “fatigue” as its major criterion. For that reason many patients who fall under this diagnostic label hate the name — they call it the F-word — since for many of them “fatigue” per se is not the major problem, and does not best represent how they would explain their condition. Thus, this CDC-1994 definition is now widely recognised to have a number of limitations. These include the fact that symptoms are mainly self-reported (e.g. the clinical signs required in the CDC-1988 definition have been removed); the terminological criteria are vague (e.g., “fatigue”, “malaise”, “unrefreshing specificity of sleep”, the definition etc.); the is poor, allowing heterogeneous groups of patients (e.g., those with somatoform disorders, fibromyalgia syndrome, etc.) to coexist under the one umbrella term (Salit, 1996; Jason et al., 1999); and it makes no attempt to differentiate is worth 16 (continued on page 17)
17 Publizr Home