Family struck by mystery illness
PUBLISHED: 12:58 22 June 2006 | UPDATED: 11:50 04 May 2010
THIRTY-SEVEN years ago, the World Health Organisation classified a range of symptoms – which became known as Yuppy Flu – as a physical illness. Yet still today UK sufferers of ME – Myalgic Encephalomyelitis – are often treated with contempt by doctors.
THIRTY-SEVEN years ago, the World Health Organisation classified a range of symptoms - which became known as "Yuppy Flu" - as a physical illness.
Yet still today UK sufferers of ME - Myalgic Encephalomyelitis - are often treated with contempt by doctors.
This serious, long-term neurological condition affects around 200,000 people in the UK but sufferers are no nearer to finding a cause or cure.
LESLEY INNES talks to an Ely mother whose daughter has been robbed of the chance of a normal life because of the illness.
AS a toddler Laura Judd lacked the energy to keep up with her playmates.
But despite repeated visits to the doctor, her mother, Lesley, could find no reason for her young daughter's lack of stamina.
Once Laura started school she began complaining of a range of symptoms - sore throat, fatigue, sleep disturbance and intolerance to light - and gradually began missing more and more lessons.
Hospital tests followed but still the doctors were baffled as to the cause of Laura's problems.
A chest virus followed when she was 11 and although she recovered, her health went steadily downhill.
When she was 14, despite feeling ill, she begged her mother to allow her to go on a school climbing trip.
"As the coach arrived back, all the children jumped off and ran up to their mothers to tell them about the wonderful time they had," said Lesley. "Finally Laura came from the back of the bus and it was as much as she could do to walk. That was the last time she went to school."
Finally, after years of searching, a chance discussion at work led occupational therapist, Lesley, to a Cambridge-based doctor who diagnosed Laura's condition as ME.
"I had heard of the illness," said Lesley, "but I hadn't realised it came on like this. I thought a person, who hadn't recovered properly from flu, developed ME and then it was a gradual recovery."
Despite the diagnosis, Laura's condition continued to deteriorate and she became confined to bed at her home in Prickwillow.
Sometimes, at her worst, she was too ill to feed herself, clean her teeth or even talk.
That was 12 years ago and now, at the age of 26, Laura is still confined to her room.
She has been robbed of a normal childhood, an education, the chance to be a carefree teenager and make plans for her future.
Laura and her mother have missed out on a normal mother and daughter relationship - the chance to go shopping together, share an evening at the cinema and disagree over Laura's choice of boyfriends.
Although her condition has improved slightly and she can watch television and use her computer, Laura has a poor quality of life.
She is dependent on her parents and Lesley has given up her job to be a 24-hour carer for her only child.
"It gets tough sometimes," said Lesley. "It's not easy. Laura says she's lucky to have her mum and dad and that we have enough money to afford to try different treatments. But other times she is in absolute despair. It's a state of alert helplessness.
"We live a little bit day-by-day. We don't lead a normal life. Laura doesn't have friends come to visit because she can't cope with the stimulation. She has been so ill for so long.
"Since the doctor who diagnosed Laura retired, there is no-one in Cambridge particularly interested. There are doctors in other parts of the country but Laura is too ill to travel. So it's a Catch 22 situation.
"If we knew what we were fighting we might be able to fight it. But we don't know the beginning or the end."
Despite thousands of people suffering from ME, the only research into the disease is being carried out with the help of private donations.
"There are still a lot of doctors who won't accept that it is a physical illness," added Lesley. "The Government has paid psychiatrists to set up graded exercises for patients. But this is not what is needed and doesn't help. What is needed is money for bio-medical research to try to find out what causes this illness and perhaps find a cure.
"I worry about the future and what will happen when I become too old or too decrepit to look after Laura."
INFO: Anyone wanting further information can contact Blue Ribbon for the Awareness of Myalgic Encephalomyelitis (BRAME) on 01493 393717 or visit its website at www.brame.org; support group the 25 per cent ME Group at 21 Church Street, Troon, Ayrshire, KA10 6HT, by email at enquiry@25megroup. org or visit its website at www.25megroup.org or the MERGE medical research organisation on 01738 451234 or visit its website at www.meresearch.org.uk
# ME, also known as chronic fatigue syndrome, is a serious long-term neurological condition which affects around 200,000 people in the UK, including 20,000 children.
# A quarter of those with the illness are severely affected, many becoming house-bound or bed-bound for many years.
# No single factor has been identified as the cause of the condition, which is known to affect all social classes, ages and ethnic groups, although it is often triggered by a virus.
# Symptoms are numerous and extremely varied ranging from muscular and joint pain to digestive and emotional disturbances.
# Treatments or medications which help some patients do not necessarily help others and to date there is no known cure.