‘Debilitating disease still not officially recognised!’
by Stuart Chandler
Reprinted from Doncaster Free press Page 12 3rd May 2001.
Eleven years ago Marion Jones had a bout of 'flu. She still hasn't recovered from the after-effects. Following the initial illness she suffered extreme fatigue. Her voluntary work suffered and she eventually ended up bed bound for three years. She was diagnosed with a post viral condition by doctors and advised to rest. Marion, 53, is now in a wheelchair, and is looked after by her husband, Malcolm. She can no longer work, can barely move during the first part of the day and has developed chemical intolerances. Her chances of recovery, according to her doctors, are slim, she may not recover at all. Marion now knows that she suffers from M.E. (Myalgic Encephalomyelitis) the disease which used to be called "yuppie flu."
According to the national organisation, Action for ME, the condition affects an individual at a physical, mental and emotional level. Symptoms include extreme fatigue, muscle pain, flu like malaise, difficulties with concentration and memory, loss of balance, and alcohol intolerance. Some sufferers also experience digestive problems, food allergies, visual disturbances, migraines, sleep disorders, poor temperature control and mood swings. Symptoms fluctuate wildly, with frequent periods of remission and relapse. People's lives, careers, relationships and families can be torn apart. The organization says that M.E. has no identifiable cause, but the most common trigger appears to be a viral infection. There have been insufficient studies to give exact figures but it is likely that around 150,000 people in the UK have ME. Around 20 per cent are children.
According to the local group, there are about 450 people in the Doncaster area with the condition. Mike Valentine of Action for ME, Doncaster, said:- "These figures are based on estimates because ME is not officially recognized. Those who have the condition are treated by enlightened G.P.’s, private practitioners or alternative therapists. The syndrome is not life threatening. "But the suicide rate among sufferers M.E. is high because the symptoms can very easily lead to depression," said Mike.
Marion, who lives in Branton, said:- "I'm so lucky to have Malcolm to look after me, this condition is so debilitating, people have tried to be understanding but they don't know what the pain is like. The fatigue is not simply tiredness, it's complete inability to do anything.