Thoma, Froehlich, Hattesohl, Quante, Jason & Scheibenbogen
Abstract
Since 1969, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has been classified as a neurological disease in the International Classification of Diseases by the World Health Organization.
Although numerous studies over time have uncovered organic abnormalities in patients with ME/CFS, and the majority of researchers to date classify the disease as organic, many physicians still believe that ME/CFS is a psychosomatic illness.
In this article, we show how detrimental this belief is to the care and well-being of affected patients and, as a consequence, how important the education of physicians and the public is to stop misdiagnosis, mistreatment, and stigmatization on the grounds of incorrect psychosomatic attributions about the etiology and clinical course of ME/CFS.
The extent and nature of the attribution of ME/CFS to psychosomatic factors have changed within the last 50 years. In a publication in the British Medical Journal, McEvedy and Beard viewed ME/CFS as epidemic hysteria on the grounds that—among other reasons—ME/CFS predominantly affected women (including nurses). However, a recent reanalysis of the data showed that the occurrence of ME/CFS at that time followed the usual spread of infectious diseases.
More recent psychosomatic theories, such as those put forward by the authors of the PACE study published in 2011, focus on so-called “dysfunctional cognitions and behaviors” that are assumed to maintain the symptoms. Specifically, in the theoretical assumptions of the PACE study, fear of activity, resulting activity-avoiding behaviors, and deconditioning are held responsible for the maintenance of ME/CFS symptoms.
In stark contrast to these widespread beliefs, empirical evidence does not support a psychosomatic etiology of ME/CFS . There is also a broad consensus among patients with ME/CFS, as well as ME/CFS experts, that psychosomatic factors do not play a relevant role in the etiology as well as the clinical course of ME/CFS.
A content analysis by Siegel et al. of 241 American newspaper articles published between 1987 and 2013 shows that 65% portray the etiology of ME/CFS as organic, 22% as both organic and psychogenic, and only 3% as strictly psychogenic.
Nevertheless, a vocal minority of researchers remains convinced of a psychosomatic (co-)causation of ME/CFS despite the frequently demonstrated organic abnormalities and the simultaneous lack of evidence for relevant psychosomatic factors.
Due to the lack of knowledge about ME/CFS among health care professionals and its frequent and incorrect classification as a psychosomatic illness, it is extremely difficult for affected persons to receive not only appropriate diagnostics and treatment but also nursing care, disability benefits, pensions, or social benefits.
Conclusions
To improve this situation in the future and to provide adequate research funding and medical care for ME/CFS, it is important to educate physicians and the public about how wrong and harmful false psychosomatic disease models are in ME/CFS.
It is, therefore, encouraging that the problem of incorrect psychosomatic attribution of ME/CFS seems to have reached the political arena. The integration of supportive psychotherapy on the grounds of a biomedical understanding of ME/CFS into interdisciplinary teams would represent an important step forward in terms of comprehensive care for ME/CFS patients. However, there is still a lot of educational work to be done before this concept reaches the daily care of patients with ME/CFS.
Even though, in recent years, more and more healthcare practitioners view ME/CFS correctly as a somatic illness, there are still widespread views in the medical community of ME/CFS being a psychosomatic illness.
These views are detrimental for affected patients as they can result in misdiagnosis and harmful therapies, such as GET, which can result in lasting worsening of symptoms. Moreover, false psychosomatic attributions lead to stigmatization.
Source: Medicina open access
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