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Unravelling the mystery of a cruel condition
Thursday 12 May 2011
Unravelling the mystery of a cruel condition
As researchers try to pinpoint the cause of the debilitating illness known as ME, Lisa Salmon speaks to a mother who helped her beloved daughter kill herself to end her suffering
BRUSHING off ME as chronic tiredness is like equating a tsunami with a ripple on a lake.
Myalgic encephalomyelitis, also known as chronic fatigue syndrome, varies widely in its severity, but symptoms range from extreme fatigue and muscle pain to memory loss, fits and paralysis.
Far from being a psychological condition, as was once suspected, the World Health Organisation now classes ME as a neurological illness. But it’s still not known exactly what causes it to develop.
In its most severe form, affecting around 25% of the 250,000 sufferers in the UK, ME leaves people housebound and dependent on carers.
One of those was Lynn Gilderdale, who suffered so much in 17 years with the illness that her mother, Kay, bravely took the heartbreaking decision to help her daughter kill herself.
Kay’s book about Lynn’s suffering and death, One Last Goodbye, has just been published and aims to highlight the torment ME can cause.
Lynn was a sporty 14-year-old who loved music and ballet when she developed ME. She felt unwell after having a routine tuberculosis vaccination and in the next few months suffered a series of illnesses including flu, bronchitis and glandular fever.
Within six months she was bed-ridden, tube-fed, paralysed, couldn’t speak or remember, was in constant pain and had terrible muscle spasms.
Eventually, after being told that the illness could be anything from a phobia of school and a reaction to sexual abuse to “Lynn Gilderdale Syndrome”, her mystery illness was diagnosed as ME.
While a few of Lynn’s problems improved slightly over the years, due to medication targeting specific symptoms, other aspects of her health deteriorated. She developed kidney and liver problems, a blood clot on her lungs and angina.
After 17 years of torment and 60 hospital admissions, she decided she’d had enough. “She had begun to lose hope and realised it would take a miracle for her to recover,” said Kay.
“The only other thing she wanted was to be better and if she couldn’t have that, then death was better than the life she had.”
In December 2008, Lynn, 31, tried to kill herself by injecting an overdose of morphine. But when it didn’t work, she pleaded with her mother to get some more.
“I’d seen how she suffered for all those years,” explained Kay. “She wasn’t just lying in bed, she was in pain, struggling, and put up a great fight every day.
“I understood totally why she wanted to go but I didn’t want her to.”
The devoted mother begged her daughter to carry on fighting the illness, but Lynn said she couldn’t do it any longer.
So that night, Kay got Lynn the morphine and other drugs needed to help end her life as peacefully as possible.
But as Lynn’s struggle with ME finally ended, another huge fight began for Kay. She was arrested for attempted murder.
Two years later, in January 2010, she was finally cleared of the charge after the court heard of Lynn’s “unimaginably wretched existence”.
Kay, 56, of East Sussex, has no regrets about what she did. She stressed: “As much as it pains me not to have Lynn here, I know it was the right thing for her.”
Lynn told her mother that after she died “the answer will be inside me”, and the pathologist who carried out a post-mortem examination found infected nerve roots and nodules of nageotte (an indicator of neuronal cell death), suggesting a possible past inflammation in her spinal cord.
Such inflammation has been found during other ME post-mortem examinations, and it’s hoped further research could help find a cause for the illness.
The charity Action for ME is raising funds to set up a biobank to collect more samples for analysis.
“It’s a multi-system fault,” said Kay, “but it has to stem from somewhere and the final pieces of the jigsaw need to be found.
“Lynn can’t have suffered for 17 years for nothing. This is such a serious illness and the answer has to come eventually.”
In the run-up to ME Awareness Week (May 8 to 14), Kay believes there’s now more sympathy and understanding about the illness than there was when Lynn first became ill, when the condition was often referred to as “yuppie flu”.
“You don’t get that any more, thank goodness,” said Kay. However, she points out that until the root cause of the illness is finally identified, some doctors will remain sceptics.
“It’s such a cruel illness that people deserve respect and support, not to be told they’re pretending.
“We need good research and all medical professionals to accept the illness for what it is. There’s still a very long way to go.”
While it often develops after a virus, like flu or glandular fever, the condition can also occur gradually and for no obvious reason.
Some studies have suggested genetics may be involved, and vaccinations or environmental toxins are occasionally identified as possible triggers, as are physical injury and trauma.
As Sir Peter Spencer, chief executive of Action for ME, explained, the lack of a definitive diagnostic test and ready cure contributes to the problem of perception.
“Medical science doesn’t yet have all the answers,” he said. “But if the tragic story of Kay and Lynn Gilderdale isn’t enough to convince people ME is real, unfortunately there’s no shortage of other stories.”
While there’s still no cure, Sir Peter said most sufferers improve over time. “People often find they don’t go back completely to the way they felt before they became ill, but they do recover sufficiently and/or learn to manage their symptoms well enough to lead happy and fulfilling lives.”
Overwhelming and persistent fatigue not relieved by rest.
Feeling generally unwell, like you have the flu, possibly with a sore throat.
Pain felt as aching in muscles and joints, pins and needles, muscle twitching and headaches or migraine.
Cognitive difficulties including poor concentration and memory problems.
Digestive problems including nausea and loss of appetite, indigestion and stomach cramps.
Nervous system problems including poor temperature control, sweating, dizziness and difficulties with balance and vertigo.
Increased sensitivity to alcohol, medication, some foods, bright lights, noise and odours.
The above originally appeared here.
Please note: This article contains references to death. If you have feelings of helplessness, or of suicidal thoughts, seek help immediately. Lifeline is an excellent starting point: Lifeline – Suicide Prevention resources and links.
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