Halldorsdottir NH. Living with unimaginable exhaustion [Icelandic].
Ritid. 2025 Sep 30;2.
Google translation from Icelandic to English,
https://ritid-hi-is.translate.goog/.../view/280?_x_tr_sl=is&_x_tr_tl=en&_x_tr_hl=en
Living with unimaginable exhaustion
From an interview study on ME in relation to the history of the disease and the concept of fatigue
- Nanna Hlin Halldorsdottir
Keywords: ME, the disease, exhaustion, PEM fatigue, functional adaptation, chronic illness
Abstract
Although fatigue is a daily part of life, it is often the fate of chronically ill people to live with greater fatigue; indescribable exhaustion and loss of energy. In recent years, it has become increasingly clear that one group of chronically ill people living with ME (Myalgic Encephalomyelitis) – previously known as chronic fatigue – experience a specific type of fatigue known colloquially as PEM (post-
exertional malaise ). The characteristic feature of PEM fatigue is that the fatigue experience is not necessarily felt at the moment when the person is in high activity, whether it is physical, emotional or mental stress. PEM can occur 24 hours after stress. Since there is still a lack of biomarkers for ME, this type of fatigue has been crucial for ME patients to adopt a (limited) treatment called activity adaptation to adapt to the limitations that come with the disease. The aim of this article is to discuss an interview study with thirteen ME patients about their experiences of fatigue, illness and what it is like to live with ME in Iceland today. In order to explain the complex situation of this patient group, the history of the acceptance of ME and chronic fatigue in Iceland as well as humanistic sources on fatigue are described. The interview study shows that although functional adaptation helps, it can be difficult to understand various types of stress. The results of the study thus show that in PEM fatigue, mental, physical, sensory and emotional types of exhaustion are mixed. As the interview study testifies, this complex fatigue is a more difficult subject than measurable units of physical activity such as a 500-meter walk can indicate. This underlines how difficult it is to live with a disease where the lack of resources and treatments is so great.
