Journal of IiME Volume 2 Issue 2 A Severe ME-aware nursing model (continued) cake Patient suggested breaking the food into small pieces and placing directly in mouth. Replaced lost food. Successful intervention. Evaluation : Patient evaluation : Was surprised by the strength of spasms and shocked by the loss of ability to even bite a rice cake. Grateful for the calm and valuing posture and support in being enabled to eat, because she needed the food to avoid hypoglycaemia. Shaken by the intensity of the experience. Nurse’s evaluation : Mind : Pleased they had the knowledge and insight to appreciate the complexity of symptoms . Body : Remained very still and maintained an open, calm and affirming posture. Emotion : Felt concerned and dismayed yet managed to convey warmth and positive unconditional valuing. Spirit : Maintained stillness and centeredness, despite distressing circumstances and maintained partnership stance, open for patient’s communication. Learning : although meal planned well, with awareness of potential symptom issues, the strength of the spasms and the rapid deterioration was unexpected in reality. Even under stress and with patient distress the nurse responded as intended. Replacing the food was an important aspect. Conclusion New ways of enabling nurses to assist patients with ME/CFS urgently need developing . The starting point, as this article has stressed , must be awareness that ME/CFS is a neurological disease , with multi-system dysfunction. Some of the complex environmental hurdles that ME/CFS sufferers have to overcome in order access care have been detailed. Invest in ME (Charity Nr. 1114035) References : • Andersen MM et al. Illness and disability in Danish CFS patients at diagnosis and 5year follow-up. J Psychosomatic Research 2004; 56: 217-229. • Archibald G (2000) A Post -modern nursing model , Nursing Standard, May 10/vol14/no34/2000 40--41 • Bassett J (2006) Testing for Myalgic Encephalomyelitis http://www.ahummingbirdsguide.com/te stingforme.htm • Bell, David S MD 1995, The Doctor's Guide to Chronic Fatigue Syndrome, Perseus Books, Massachusetts • Cairns, R. and Hotopf, M. (2005) Prognosis of chronic fatigue syndrome: a systematic review. Occupational Medicine 2005 55 20-31 • CDC ( 2006) The Chronic Fatigue and Immune Dysfunction Syndrome Association of America and The Centers For Disease Control and Prevention Press Conference at The National Press Club to Launch a Chronic Fatigue Syndrome Awareness Campaign NOVEMBER 3, 2006 www.cdc.gov/od/oc/media/transcripts/t 061103.htm • Colby, Jane 1996, ME: The New Plague, Ipswitch Book Company Ltd, Ipswitch to • Corbin JM, Strauss A (1991) A nursing model for chronic illness management based upon the trajectory frame- work. Scholarly Inquiry Nurs Pract: an International Journal 5: 155–74 (continued on page 42) Page 41/74 A self –reflective, partnership-based model of practice has been outlined, in order to begin to meet the complex needs of these still neglected patients. www.investinme.org

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