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  • Experiences with Severe ME in Institutions, Dr Kreyberg, Norway

Experiences with Severe ME in Institutions, Dr Kreyberg, Norway

Norwegian medical professionals generally lack the knowledge and experience needed to diagnose and provide advice on how to manage Myalgic Encephalopathy. The subject is also absent from the education of nurses and other health workers. Experience must, for now, be accepted as key to understanding and managing this largely unexplained disorder. Seven nursing homes here outline which extra resources would be necessary to adequately treat and care for seriously ill ME-patients, according to their experience. Apart from suggesting specialised units, the answers comprise technical adjustments to provide maximum protection from sound and light, advanced ventilation systems, flexible kitchen facilities and individually adapted dietary regimens; medical advisors; and a carefully selected and limited number of carers to look after the ME-patient around-the-clock. Stability, predictability and consistency are necessary for the patients to cope, and a small team will enable the carers to cooperate, be alert to signs of adverse reactions, and take adequate measures to prevent deterioration. Routines for debriefing staff working with patients in a permanent crisis-like condition was called for; and extra time and resources to support relatives that assist in planning and caretaking, speak on behalf of the patient, and are crucial in providing know-how - all of which necessitates increased staff in general.

www.med.uio.no/iasam/forepi/epidemiologi/me/artikler/Experiences_with_Severe_ME_in_Institutions.pdf

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