The plight of ME sufferers
The tragic death of Lynn Gilderdale has again highlighted how severely ME can affect a minority with the illness.
The Gilderdale family who have always been supportive of our organisation have taken part in a number of awareness campaigns and fundraising activities over the years including a Silver Fish fundraising project co-ordinated by Richard Gilderdale's colleagues in the Sussex Police Force.
We remember also a number of us along with Richard attending a celebrity golf day in Surrey a few years ago. Lynn and her mother Kay were always willing to help highlight how things are for the very severely affected.
Recent research, commissioned by the Sussex ME/CFS Society, estimates that in Sussex there are more than 6,000 adults and children that are affected by Myalgic Encephalopathy/Chronic Fatigue Syndrome and that around 1,000 of these are virtually house-bound with a few confined to the bedroom.
ME is classified by the World Health Organisation as a neurological disorder and the National Institute for Health and Clinical Excellence (NICE) have issued guidelines to the medical profession.
The Sussex ME Society has worked with the Primary Care Trusts (PCTs) of Sussex and a specialist NHS service has been operational since 2005 that has dealt with over 2,000 referrals.
ME can follow a viral infection or trauma. Symptoms include profound physical and mental fatigue, muscle pain, mood changes, sleep disturbance, difficulty with concentration and short term memory along with gastric and eyesight problems. The symptoms, which vary and fluctuate, can be exacerbated by over exertion. Overtime, most patients gradually improve.
Colin Barton
Sussex ME/CFS Society
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Friday 25 May 2012
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