How are patients treated?
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 (16), 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.
There is no specific treatment. We believe that myalgic encephalomyelitis may consist of several subtypes, which cannot at present be distinguished using existing diagnostic criteria. Such subtypes may have distinct aetiologies and pathogenic mechanisms, which could require different therapeutic approaches.
Internationally, myalgic encephalomyelitis has gradually come to be viewed as a somatic disorder, partly as a result of new and better research. In the USA, this view is gaining ever-increasing support and is now dominant within leading research communities (4, 8) – (14). However, as a result of the previously more psychosomatic view of the disease, and also the broad diagnostic criteria, various psychological and psychosomatic approaches have been used in an attempt to treat patients. The idea was that shifting the psyche towards positive thinking using techniques such as cognitive behavioural therapy (CBT) and/or various forms of graded exercise therapy (GET) would give good clinical results. Some patients have benefited from such treatment, and cognitive behavioural therapy can improve patients’ ability to cope with the disease. However, others have experienced no effect or have even deteriorated (17) – (19). Health professionals must therefore keep in mind that treatments requiring physical or mental exertion can often lead to patients becoming overstrained and to worsening of symptoms. We refer again to the statement in the national guidelines regarding prolonged deterioration following physical or mental exertion (1).
Treatments such as cognitive behavioural therapy and graded exercise therapy are controversial in the literature, with some studies reporting improvement of symptoms and others reporting exacerbation. However, it is difficult to draw conclusions from many of these clinical studies given that patient populations were often heterogeneous and limited, differing diagnostic criteria were used and methods of assessment and follow-up varied.
A report recently submitted to the US health authorities concludes that continued use of the Oxford criteria (the broadest) «may impair progress and cause harm», and recommends that these criteria should no longer be used (20). Nevertheless, studies based on these broad criteria are still used to recommend specific treatments; see for example the Norwegian Knowledge Centre for the Health Services’ article on how exercise therapy can help persons with chronic fatigue syndrome/myalgic encephalomyelitis (21).
However, the results of large user surveys conducted by patient associations in Norway (17) and the UK (18) 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 (21, 24) – (26). 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 (17, 18). 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 (5), and not be misinterpreted as an unwillingness on the part of the patient to acknowledge or improve their own situation (17, 18).
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 (5, 20) 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.