Care for chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) patients in Belgium: time for a paradigm shift

Abstract

Dear Editor, Tobback et al. depict a care model for patients with ‘medically unexplained symptoms’, including chronic fatigue syndrome (CFS). As stipulated by the authors the care for patients with myalgic encephalomyelitis (ME)/CFS in tertiary care reference centres from 2002 onwards, was negatively evaluated by the Belgian Health Care Knowledge Centre, looking at socio-professional reintegration. Another evaluation showed that the peak oxygen uptake (VO2max), an objective measure for the exercise capacity, had not changed and that substantial subgroups had deteriorated on various subjective measures, e.g. pain and cognitive functioning. It is surprising to read that the ‘new’ care model proposed by large is the same as the ‘old’ care model, which have proven to be ineffective and counterproductive, as acknowledged by the authors. The authors assert that Cognitive Behavorial Therapy (CBT) and Graded Exercise Therapy (GET) are evidence-based therapies. Looking at objective measures, e.g. metres walked in 6 minutes or VO2max, the effects of CBT and GET are largely insufficient to qualify as ‘effective’. Even more, CBT and GET have shown to have detrimental effects on the condition of many patients with ME/CFS. The authors emphasize the importance of a correct diagnosis. While ME and CFS are considered to be synonyms, the criteria for ME and CFS define two distinct clinical entities. Post-exertional malaise, a long-lasting increase of symptoms, e.g. pain and cognitive deficits, after minor exertion, obligatory for the diagnosis ME, are not mandatory for CFS. ‘Fatigue’ is not obligatory to qualify as ME patient. The distinction between patients with and without post-exertional ‘malaise’ is reflected by clinical and immunological differences. This distinction has profound implications for the care of patients. In conclusion, looking at the disappointing results of (bio)psychosocial ‘therapies’ and the plethora of distinct (immunological) abnormalities observed in the last decades, it is high time for a paradigm shift.