Journal of IiME Volume 2 Issue 2 www.investinme.org A Severe ME-aware nursing model (continued) is defined as a normal recovery state from exertion and that is precisely what does NOT happen in this illness"; this is extremely important for the nurse to assimilate, in order to effectively work with people with severe ME. Everyday life for the severe ME sufferer is a perpetual struggle. As Owen (2007) points out the most severely affected may not be able to speak, eat, swallow, open their bowels. They may not be able to sit up or move themselves, they may be too exhausted to dress or wash . The sound of running water may be too much for them to bear, they may not be able to open their mouth to brush their teeth. Crowhurst L. (2007) describes how : "Having severe ME is unimaginable ; the experience is so different , intense and unremitting than anything I have ever experienced before. I am never unaware of the range of symptoms that rage through my body , and are dominated by intense never ending pain in every millimetre of my skin and muscles, over and throughout my whole body; head shoulders, back, front , arms legs, hands , feet, toes , fingers, eye lids , scalp the soles of my feet, the tip of my nose , my eyebrows even. They all burn, throb, tingle, itch, and hurt in ways indescribably unbearable , along with other unusual sensations" There are no known appropriate treatments for ME/CFS available at this time and it has been found that some of the mainstream therapies applied to ME sufferers have been unhelpful or harmful on many occasions , especially treatments such as Cognitive Behavioural Therapy and Graded Exercise Therapy.. (Crowhurst 2005). Knowledge, sensitivity and awareness are paramount. The nurse must be able to respond creatively in order to aid the person. This means learning to understand: Invest in ME (Charity Nr. 1114035) Management : Family members and carers, with the patient’s agreement , can contribute a wealth of essential knowledge and valid information, in the development of an individualised management plan. People with severe ME/CFS are at great risk, generally, of a dramatic increase in their symptoms, which could plunge them into even greater depths of illness ; this is especially so if (continued on page 35) Facts About ME 'It is accepted by the most experienced ME clinicians that some degree of encephalitis has occurred both in patients with ME and in those with post-polio syndrome: the areas chiefly affected include the upper spinal motor and sensory nerve roots and the spinal nerve networks traversing the adjacent brain stem (which is always damaged). In nearly every patient there are signs of disease of the central nervous system.' - Professor Malcolm Hooper Page 34/74 - what is needed, - when it is needed and - how it is needed ; which may not always be obvious or repeatable. Any activity where thought and action work together can easily become out of reach of the person with severe ME/CFS, without any clear understanding or explanation of why. Simply speaking on a telephone for example, could be far too much for the person :

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