Journal of IiME Volume 2 Issue 1 www.investinme.org Experiences of Care in Institutions with Severely-Ill People with ME (continued) someone is around when there are severe and constant symptoms because it gives security and certain diversion. It can be impossible to hold a tooth brush, fork or pen or hold a telephone conversation, yet still be possible to press an sms message with the hand resting on support. Such apparent inconsistencies in what the ill person can and can’t do, show a totally characteristic pattern, but often becomes a source of conflict amongst the staff. These conflicts have to be acknowledged early and have to be solved by someone who knows the nature of the illness. Improvement requires more stimulation and contact and the staff becomes easily overworked when the ill person’s capacity increases. The capacity to talk by oneself is greater than the capacity to take input from others or enter into discussion, which demands adaptation of concentration from outgoing to incoming. All adjustments are abnormally demanding with ME. Even though this wasn’t directly formulated, this insight was expressed in different ways, also considering the difficulties with transport, change of staff and similar. One area where the answers were somewhat different involved food and food intolerance. Food intolerance increases symptoms, and a severe patient becomes just quieter. It is obvious that one can’t experiment with activities even if the rules allowed one to do so, and that the institution should be able to take this into consideration. Here the rules have to be adjusted to the nature of the illness. It is known from experience that people with ME all over the world spontaneously change to a lighter diet with lots of fruit and vegetables. Thinking of the unstable circulation that is a trademark of ME, it is maybe not unexpected as one knows that several litres of blood is redirected to the intestine after a meal, and that the composition of the diet’s nutritional content can make a big difference. (Waaler, Erikse & Janbu, 1990; Waaler & Eriksen, 1992; Eriksen, Waaler, 1994; Waaler & Toska, 1999). Those who didn’t have previous experience of ME patients, wished to a greater degree for medical justification to support the care being given. A few also expressed a certain ambivalence toward relatives’ strong opinions. Those who knew the patient and/or relatives beforehand, were more open for their expertise even if the illness was not medically understood. Even though performance targets were not asked for here, it was clear that systems which were outlined by patients/relatives were followed because they worked well. There is no overview of how ME is distributed in the population. Hospital statistics can show the relative emphasis of those with the strongest resources. There can be a large hidden number among drug users, Invest in ME (Charity Nr. 1114035) students and the young unemployed, farmers, artists, pensioners, vagrants and misdiagnosed people in locked wards in psychiatric hospitals (Kreyberg, 2004b). This small survey shows how important experience is in the work with ME. It would be preferable to do a wider survey of the competence that exists all around the country, and build on this in order to begin to establish adequate and decentralised services for a very vulnerable and forgotten group of patients as soon as possible. REFERENCES • Dåvøy, L. (2007). Interpellasjon i Stortinget • Eriksen, M. & Waaler, B. A. (1994). Priority of blood flow to splanchnic organs in man during pre- and post-meal exercise. Acta Physiologica Scandinavica, 150; 363-372. • Gilliam, A. G. (1938). Epidemiological study of an epidemic diagnosed as poliomyelitis occurring among the staff of the Los Angeles County General Hospital during the summer of 1934. Public Health Bulletin No 240, April. United States Public Health Service, Washington D. C. Government Printing Office • Holmes, G. P., Kaplan, J. E., Ganz, N. M. et al. (1988). Chronic Fatigue Syndrome: A Working Case Definition. Annals of Internal Medicine, 108; 387-9. • Hyde, B. M., Goldstein, J. & Levine, P. (Ed.) (1992). The Clinical and Scientific Basis of Myalgic Encephalomyelitis /Chronic Fatigue Syndrome. Ottawa: The Nightingale Research Foundation. • Jason, L. A., Helgerson, J., Torres-Harding, S. et al. (2003). Variability in Diagnostic Criteria for Chronic Fatigue Syndrome May Result in Substantial Differences in Patterns of Symptoms and Disability. Evaluation and the Health Professions, 26(1); 3-22. • Kennedy, G., Abbot, N., Spence,V. et al. (2004). The specificity of the CDC-1994 criteria for chronic fatigue syndrome: comparison of health status in three groups of patients who fulfill the criteria. Annals of Epidemiology, Feb; 14(2); 95-100. • Kennedy G., Spence V., McLaren, M. et al. (2005). Oxidative stress levels are raised in chronic fatigue syndrome and are associated with clinical symptoms. Free Radical Biology and Medicine, Sep 1; 39(5); 584-9. • Khan, E., Kennedy, G., Spence, V. et al. (2004). Peripheral Cholinergic Function in Humans With Chronic Fatigue Syndrome, Gulf War Syndrome, and With Illness Following Organophosphate Exposure. Clinical Science,Feb; 106(2); 183-9 (continued on page 16) Page 15/34

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