Article extracts:
The assessment and treatment of patients with myalgic encephalomyelitis and chronic fatigue syndrome/myalgic encephalomyelitis in Norway is, according to a SINTEF study from 2011 highly inadequate: There is a lack of expertise within the social, welfare and healthcare services, and disagreement over the diagnostic criteria. Furthermore, the provision of appropriate treatment, rehabilitation and care is lacking, as is expertise regarding the particular needs of children and adolescents. Research activity is limited. Patients experience stigma and a lack of respect from healthcare personnel…
… the results of large user surveys conducted by patient associations in Norway and the UK are more clear-cut and surprisingly similar: Cognitive behavioural therapy had little or no effect in most, while a minority experienced either improvement or deterioration.
For graded exercise therapy the results are discouraging: 66 % of patients surveyed in Norway and 56 % in the UK became worse, sometimes markedly so. Only 14 % of patients in Norway and 22 % in the UK experienced an improvement. Approximately seven out of ten patients in both studies found that pacing led to an improvement in their condition.
The Cochrane and PACE studies (22, 23) are often used as grounds for recommending cognitive behavioural therapy for myalgic encephalomyelitis, but even these two studies show that cognitive behavioural therapy is helpful in only a minority of patients when compared to a control group and standard monitoring by a doctor.
We therefore feel it is unfortunate that psychosomatic therapy continues to be recommended by the health authorities and in parts of the healthcare system. We recognise that it is difficult to distinguish those patients who may benefit from psychosomatic therapy from those who should receive a different form of treatment. This should lead to increased consideration of patients as individuals and greater care regarding choice of therapy. Patients’ experiences and knowledge of their own limitations should be taken seriously, and it may also be helpful to involve relatives.
We are aware of far too many cases of patients with severe myalgic encephalomyelitis being poorly received by doctors and other healthcare professionals. The status of patients in Norway poses serious ethical challenges for the Norwegian healthcare system. Many of those affected report that they are given unhelpful or even harmful treatment. Greater expertise regarding how to diagnose the disorder, which forms of treatment are most appropriate, and how the disease manifests for the patient and their close family would be highly useful for both clinicians and patients. In particular, we believe that classic symptoms such as cognitive impairment and activity intolerance (post-exertional malaise) must form the basis of both diagnosis and treatment, as in the new criteria proposed by the Institute of Medicine, and not be misinterpreted as an unwillingness on the part of the patient to acknowledge or improve their own situation.
A more deliberate use of the diagnostic criteria will result in increased understanding of the disease and of patients’ lives, and more respectful and appropriate treatment. It will also lay the foundations for ramping up biomedical research efforts in the hope of developing more effective treatments.
We are six professors who, in different ways, are all involved in issues related to myalgic encephalomyelitis. Some of us are medics and scientists who participate actively in research into the condition, while others are social scientists or ethicists who have taken a critical look at the literature in the field from a social and socio-medical perspective.
What exactly is myalgic encephalomyelitis? by T Egeland, A Angelsen, R Haug, J-O Henriksen, T E Lea, O D Saugstad in Nr. 19 – 20. oktober 2015 Tidsskr Nor Legeforen 2015; 135:1756 – 9
