Stephen Foster, of Layton, dreams of becoming a writer. His short stories have already won rave reviews at Blackpool Writers’ Circle. That’s because he writes from the heart and about what he knows.
And what he knows best is how marginalised people can become as a result of disabilities; that others tend to judge by the trappings of disability, or shy clear of those exhibiting symptoms of such, and seldom see beyond it.
That’s why Stephen is telling his story today, as part of his campaign to promote a website, and allied helpline, which exists specifically to help others with myalgic encephalopathy – M.E – particularly younger people.
Famous M.E. sufferers include the novelist and former yachtswoman Clare Francis, the Duchess of Kent and Emily Wilcox, eldest daughter of Esther Rantzen and her late husband Desmond Wilcox
Stephen, of Addison Crescent, explains: “For the past 15 years my body has been slowly degrading, resulting in being in a wheelchair and, on some occasions, bed-bound. The reason for this is a condition better known as M.E which was classed as a neurological disease of the central nervous system by the World Health Organisation since 1969.
“It’s not a new condition, it can be traced back as far as 1750 and was referred to as febricula (little fever) and it is now believed that some leading public figures who have passed into history such as Florence Nightingale and Charles Darwin suffered from this illness.
“Currently it is estimated that 250,000 people in Britain are affected by it, and it can affect any age in many different ways. There have been more than 1,000 proven scientific biological studies on areas of this disease worldwide.
“Eighty per cent of brain scans on M.E patients show damage or lesions in certain areas of the brain, with reduced blood flow, mass cellular death and reduced grey brain matter.
“It is worth making that point because some people call it lazy syndrome – and reckon we’re faking it.
“It’s severely debilitating with painful muscles and joints resulting in very painful spasms. It causes problems with short term memory, concentration, maintaining attention, also affects the central nervous system, causing clumsiness and problems with your equilibrium, causing many to fall, or other symptoms such as migraines, sleep disturbance, irritable bowel syndrome, mood swings, and clinical depression.
“These are ALL symptoms I deal with every day of my life, reducing my ability to cope with a normal daily routine, and meaning I need the help of around 20 pills a day to allow me to have some quality of life.
“In 2006, Sophia Mirza was the first person to officially die of M.E in the UK. She was told it was all in her mind, and died soon after being released from the hospital. During her autopsy, two leading neurologists found swelling in her brain and spinal fluid, 75 per cent of her brain’s ganglia destroyed and mass cellular death.
“Her mother has still not received justice for her daughter’s death, or even an apology.
“The blood of M.E sufferers show increased cytokines (immune cell messengers), decreased growth hormone, other reduced hormone levels, and reduced amounts of a chemical required for normal energy with low blood flow through the body’s internal organs, especially the heart.
“But the worst thing I and many M.E sufferers face is the stigma – because to the outside world many of us look as if nothing’s wrong.
“We’re labelled lazy and even benefit cheats and it has cost me friends, by far the hardest pain I have to deal with, but lazy people don’t get M.E. it can strike active, hard working, fit people.
“Before I was diagnosed I went through hell, many doctors didn’t believe in M.E and called it Yuppie Flu. No one test confirms M.E, you go through a process of elimination.
“I had psychiatric therapy to prove my illness was not just in my head, and for years went without proper medication to help me fight what was happening, and that caused other problems.
“I’m not alone, thousands go through this, are discriminated against, and depression can take over in a big way.
“Through the M.E Association, Association of Young People with M.E there are people who help, online groups such as To Me or Not to M.E www.tomeornottome.yuku.com/forums/72 look at life in an upbeat way with lots of laughter.
“In 2002 the Government recognised M.E and started funding research but not a penny went to biological research or treatment. Dr Charles Shepherd, author of Living With M.E, and Dr Sarah Myhill, adviser to Action for M.E, have helped others cope.
“The message is don’t let M.E get the better of you but hit it head on. I’m in a motorised wheelchair, have lost a promising career, and old friends, but have gained new friends. I write, poems, a novel, and have a loving family.
“M.E may break your body, but not your spirit.”