Severe, and very severe ME/CFS in Norway

Prof Kristian Sommerfelt presented a study of 47 patients in Norway affected by very severe ME/CFS. The study examined which questions of the Activities of Daily Living Score (ADLS) best differentiated between different degrees of severity of ME/CFS. Those with very severe symptoms were identified primarily based on their answers to the following questions: getting up and getting dressed, showering, and tolerating sunlight (those with very severe symptoms are generally no longer able to do these or only to a very limited extent). Fatigue and muscle pain were cited as the most limiting symptoms. The course of the disease in those with the most severe symptoms was also examined. The study found that those with the most severe symptoms reported hardly any fluctuations in their symptoms and that no improvement was recorded during the observation period. The situation of family members acting as caregivers of those with very severe symptoms was also precarious. 60% were dissatisfied with the support they received from the health and social care systems. Satisfaction was highest with family doctors and physiotherapists, who have comparatively close contact with those affected. Caring for those with severely ill conditions is a 24-hour task and had negative effects on the financial and occupational situation, as well as the social relationships and health of those providing care.