Journal of IiME Volume 2 Issue 1 www.investinme.org Experiences of Care in Institutions with Severely-Ill People with ME By Sidsel Elisabeth Kreyberg Institutt for allmenn- og samfunnsmedisin, Universitetet in Oslo E-post: s.e.kreyberg@medisin.uio.no (Invest in ME have helped in translation of this article from Norwegian to English and have been given permission to republish the article, which first appeared in Norsk Tidsskrift for Sykepleieforskning, 2007; 9: 2, 16-26) ABSTRACT Caring for seriously ill ME-patients: A small survey 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. Key words English: Myalgic encephalopathy, chronic fatigue syndrome, nursing, rehabilitation, experience Introduction Myalgic Encephalopathy, ME, is discussed more often in the media than in professional healthcare curriculum literature. The condition is often given other names such as “Chronic Fatigue Syndrome”, “fatigue syndrome” or “lack of energy”, which are more or less vague definitions of various longstanding fatigue states (Lindal, Stefansson & Bergmann, 2002; Jason, Helgerson & Torres-Harding, 2003; Kennedy, Abbot & Spence, 2004). In addition to subjective symptoms, which come and go, such as self-reported fatigue, nausea and malaise, ME is characterised by reduced stamina brought on by physical or mental activity, otherwise known as activity intolerance or increased fatigability (objective exhaustion). These patients are thus exercise intolerant (Hyde, Goldstein & Levine, 1992). ). In addition they are different from other “low energy” patients in that they are at times disablingly intolerant of sensory stimuli, have markedly reduced tolerance for alcohol, medicines and various food stuffs, with disturbances in autonomous, hormonal, neurological and immunological functions, disturbed body clock, and pains which are not relieved by treatment. In a fully developed illness there are symptoms from all organs and bodily systems. Symptomology is constantly changing. Lack of explanation for a cause gives rise to psychiatric interpretations. Recent studies, however, show changes in the peripheral circulation which can explain a lot of the (continued on page 10) Invest in ME (Charity Nr. 1114035) Page 9/34

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