Journal of IiME Volume 2 Issue 2 www.investinme.org A Severe ME-aware nursing model By Greg Crowhurst RNLD , PgDip Experiential Learning , Cert Counselling Skills, MA This article outlines a self-reflective nursing model , in order to enable practitioners to enter into a sensitive partnership with patients who have severe Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. There is an urgent need to develop an appropriate model of practice for people with Severe Myalgic Encephalomyelitis (ME), if practitioners are to avoid tragedies like that of Sophia Mirza, who died from ME , after suffering appalling treatment at the hands of doctors and nurses following sectioning under the Mental Health Act for two weeks in 2003.(Hooper 2006). Crawford, Aitken and McCagh (2008) recently found that nurses still positively to patients with Multiple Sclerosis and Rheumatoid Arthritis than patients with ME/CFS, which they are more likely to wrongly view as a psychological disorder. Nurses also report low levels of training and confidence in their skills when working with patients who have ME/CFS. A great deal of conflicting advice still surrounds ME/CFS , to the care of people with leaving many patients "dismissed and abandoned without support. (Hooper et al 2005). Central ME/CFS and the cornerstone of any nursing model (Archibald 2000) are the beliefs and values, the experience and knowledge of the nurse. Background There are an estimated 62, 500 people with severe ME /CFS in the UK (DH2002) .The disease, which can occur in both sporadic and epidemic forms (Jenkins 1991) has been described in the medical literature for about 70 years. Over 4,000 papers have been published, documenting the biomedical abnormalities found in ME/CFS (CDC 2006) Invest in ME (Charity Nr. 1114035) Greg Crowhurst cares for his wife, a longterm severe ME sufferer. A comprehensive series of video by the author , showing the impact and the reality of severe ME , are available for free online at: http://www.youtube.com/user/gregcrowhurst Contact : gcrowhurst@gmail.com respond more Since 1969 ME/CFS has been classified as a neurological disorder by the World Health Organisation . ME/CFS was recognised as a specific disease entity by The Royal Society of Medicine in 1978 and as an organic disorder by the Department of Health in 1987 (Hansard 1987). Included in the NHS National Service Framework (DH 2004) as a long-term neurological condition, cycles of severe relapse are common in ME/CFS as are further symptoms developing over time. "Substantial improvement is uncommon and is less than 6%" (Anderson et al. 2004); and, "Full recovery... is rare" (Cairns & Hotopf, 2005). The Experience of Severe ME/CFS It is not 'fatigue' or 'tiredness' that is the one essential characteristic of ME/CFS but central nervous system (CNS) dysfunction (Bassett 2006). Bell (1995) describes the word "fatigue" as: 'A very inappropriate term for what patients experience. It's not really fatigue at all, which (continued on page 34) Page 33/74

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