Journal of IiME Volume 1 Issue 1 Behavioral Interventions in ME/CFS. What a difference a decade makes! Written for participants of the May 2007 UK ME Awareness Month events By Dr Ellie Stein MD FRCP As research progresses it becomes more clear that ME/CFS is heterogeneous group of biomedical disorders in which disabling fatigue, dysfunction, pain, autonomic dysfunction, cognitive/neurological immune dysfunction and gastrointestinal dysfunction are concurrently and chronically present. There is increasing evidence, much presented during the UK ME Awareness month, that ME/CFS is pathophysiologically distinct from other medical conditions and from psychiatric disorders. In terms of the etiology of ME/CFS, the pendulum has swung from assumptions of infection as a primary linear precipitant in the 1950s to hypotheses of psychological/behavioral causation in the late 1980’s to early 1990’s. Now opinion is swinging back towards biomedical causes. But instead of a linear cause and effect, current research assumes the interaction of a group of facultative vulnerabilities (genetic, biochemical, environmental) with precipitants such as infection, environmental exposure or trauma to cause disease in a complex way which may differ in each individual. Does behavioral medicine have a role to play in ME/CFS? Research suggests that the psyche plays a similar role in ME/CFS as in other biomedical conditions such as arthritis, heart disease and cancer. How one thinks about and reacts to one’s illness does not in most cases change the underlying pathophysiology, but it certainly affects happiness, hopefulness and quality of life. What is the evidence for this statement? A review of all published, controlled behavioral ME/CFS shows that there are subjective benefits in: fatigue, pain and health status. interventions in No other symptom groups have been reported upon. Neither cognitive function nor exercise tolerance seem affected by behavioral intervention. Furthermore, the subjective changes wane after 24 months (Edmonds et al, 2004;Price & Couper, 2000). These results are similar to those found in Fibromyalgia (Koulil et al, 2006). Cognitive and exercise strategies are used in other disorders with similarities to ME/CFS such as Multiple Sclerosis and Rheumatoid Arthritis. is agreed that the role of behavioral symptom self management and In these conditions it intervention is psychological adaptation. Therefore using CBT/GET lacks controversy. Invest in ME Charity Nr 1114035 After more than a decade of debate, I posit that the ME/CFS community has moved beyond the bio-psycho debate. A close read of the methodology of the two most recent behavioral studies in ME/CFS show vastly expanded definitions of CBT and GET (Pardaens et al, 2006;O'Dowd et al, 2006). These studies bear little resemblance to the early studies which angered so many. The field has shifted significantly since the early 1990’s. Does behavioral medicine have a role to play in ME/CFS? Research suggests that the psyche plays a similar role in ME/CFS as in other biomedical conditions such as arthritis, heart disease and cancer. How one thinks about and reacts to one’s illness does not in most cases change the underlying pathophysiology, What is the next step in behavioral research in ME/CFS? Self Management is used in many chronic disorders especially arthritis, metabolic syndrome and pulmonary disease. The most common self management model world wide is the Stanford Model developed by Kate Lorig and others. This is a public health model in which lay patient experts facilitate groups for self referred persons with mixed disorders. The model has proven, positive, long term impact in disorders such as arthritis where evidence based medical care accessible to all participants. However in ME/CFS where many patients cannot find a disease literate physician, the Stanford model may not be as effective. model with more illness specific content are being studied in Australia and we are awaiting publications of that data. Given that neither pharmacological nor behavioral interventions seems sufficient in ME/CFS, it prudent to recommend integrated models is in which biological, psychological and social factors are assessed and addressed. (continued page 7) www.investinme.org 6 Different adaptations of this
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