Journal of IiME Volume 3 Issue 1 Forget M.E. Not by Alison Hunter Somewhere in the recesses of my mind there is a memory of being active, of having the energy to be active...when sprinting across the street was a reflex action and a good day was a day in the surf followed then by dinner at a new restaurant followed by a movie. This poignant article is as relevant today as when it was written by Alison in September 1993. It has been reproduced here by kind permission of the Alison’s mother Chris Hunter. The Alison Hunter Memorial Foundation The Alison Hunter Foundation was established in 1998. The Foundation is an enduring memorial to Alison Hunter and all those whose lives have been devastated by ME/CFS. Alison died in 1996, aged 19, from complications arising from ME/CFS which There was a time when my body parts just existed... now, they ache as if to remind me of their presence. "Yeah boys, how you doin', still there, GREAT." An average day now consists of showering (with a seat), getting dressed, and perhaps a few hours of study interspersed with hours on the horizontal. The fatigue is not everyday tiredness, experienced after an energetic day's gardening. It is an exhaustion of body and mind so profound that it becomes a concerted effort to think, walk and sometimes even move, sit, eat or breathe. Arms and legs turn to lead; they sink through the mattress to eternity...there is often pain throughout the body which can be constant and localised (for e.g. continual severe headache) or migratory...calf muscles one day, finger joints the next. Then there is nausea, diarrhoea, ringing in the ears... Aside from the physical problems there are the cognitive symptoms (the memory loss, the lack of concentration) alongside the neurological: the dizziness and sensitivities to extremes of temperature, light and noise. Doctors have at last pinpointed the mechanism by which such signs occur - lack of blood flow to Invest in ME (Charity Nr. 1114035) included seizures, paralysis, gastrointestinal paresis and overwhelming infection resembling Behcets Disease. Such complications are rare and only present in a severe subgroup. Alison courageously fought ME/CFS for ten years and was an unstinting advocate for young people. The Alison Hunter Memorial Foundation is a non-profit institution. The Foundation works independently in a spirit of support and cooperation with all researchers, institutions and ME/CFS societies to advance scientific knowledge and medical care. http://www.ahmf.org/ certain areas of the brain. Little comfort when at the age of 18, one finds oneself unable to remember one's home address, misspelling or mispronouncing basic words or walking into a room with no recollection of why or how. "How are you?" is a question I'm asked all the time; every day almost by friends, family. Most Page 11/76 www.investinme.org
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