Myalgic Encephalopathy - better known as ME - is a disease that can strike down anyone at any stage in their life with devastating effect, but sufferers still face an uphill struggle to get it recognised as an illness. To mark ME Awareness Week, reporter Gordon Rogers spoke to sufferers and their parents about how the condition has affected their lives . . .
Olivia Freeman
Far from being the happy, outgoing and sporty 14-year-old she once was, Olivia Freeman spends most of her time in bed and on her worst days, her mother has to feed and clean her.
When she was struck down with flu-like symptoms two years ago she presumed, as most would, that after a couple of weeks rest she would be back at school, on the tennis courts and playing the violin and piano.
But Olivia, who attends St Helen and St Katherine School in Abingdon, still feels listless and can only attend lessons for two-and-a-half days per week.
Yet just a few years ago she would simply have been called lazy and even doctors would have dismissed her illness as nothing more than malingerer's malaise. But fortunately for Olivia, pictured above, and thousands like her ME is now at least partially recognised as the serious and debilitating virus it is.
Life is exhausting for Olivia, dragged down by an illness which she finds difficult to understand.
Her academic and social life has been curtailed by ME. There can be no parties, and no shopping.
"I don't go far these days. I cannot play tennis and the violin but I can manage the piano a little because I am seated and my arms are down," she said.
"The isolation is the worst thing. Rest seems to be the only answer."
Olivia's illness also impinges on her family's life in High Street, Clifton Hampden, but her father, Simon, mother Dillian(correct) and sister Alice, 16, rally round.
Mrs Freeman said: "It is difficult for people to understand how seriously Olivia is affected by this distressing illness. If you were to see her, you would think she is like any normal girl of her age.
"But everything she does can exhaust her. Her limbs ache and she is sensitive to light.
"I have to wash her hair and sometimes help feed her when she is so exhausted."
ME or Myalgic Encephalopathy, is one of the most common disabling chronic illnesses with more than 150,000 suffers in the UK - twice as many as with Multiple Sclerosis.
Yet Action for ME, a charity which supports sufferers, says it is an illness that is severely neglected by the medical world.
About a quarter of the people with ME are thought to be severely affected. It is a devastating illness that often leaves sufferers house-bound or bed-bound for years. Many are confined to wheelchairs.
Symptoms include plain, flu-like malaise after activity, concentration difficulties, paralysis and disturbed sleep. Sufferers often appear normal but have spent much of the day resting.
Research has failed to find a cause or cure for the illness. It can appear suddenly and after a few years vanish leaving behind a sufferer. Many others suffer for the rest of their lives.
Pat Williams from Stanford in the Vale has been caring for her daughter Zoe, 24, for the last eight years and speaks of her anger at the lack of recognition for an illness that affects 25,000 children in Britain alone.
Mrs Williams said: "The World Health Organisation recognises ME as a neurological illness but there is so little research being done to find out the causes and what might be done to find a cure."
Mrs Williams says the Government's Chief Medical Officer set up a working party to investigate and a report is expected later this year.
"It can be a devastating illness. It can cause total mental and physical exhaustion, confining people to their bedrooms for long periods, disrupting their lives and expectations."
**Picture: Jon Lewis
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