Belfast Telegraph

Sunday 21 September 2014

ME: an illness that remains a mystery

It's an illness that affects up to 7,000 Ulster people - hundreds of them children - yet ME is as baffling now as when it first hit the headlines in the 80s. Health Correspondent Nigel Gould reports on one of the biggest health mysteries of recent times

Above: The Hitchen brother Barry (24) with his sister Carolyne (28) and her son Rian (9) who all suffer from ME.

IT is difficult to get anything close to a proper definition of ME... Much to the chagrin of victims, it is still widely thought of as 'Yuppie Flu' or an illness that is primarily in the mind.


IT is difficult to get anything close to a proper definition of ME... Much to the chagrin of victims, it is still widely thought of as 'Yuppie Flu' or an illness that is primarily in the mind.

To victims - and it is reckoned there are up to 7,000 in Northern Ireland alone- it is a condition that saps their energy, causes endless pain and suffering, and leaves them in a constant state of despair.

ME, also known as Chronic Fatigue Syndrome (CFS), officially came in out of the cold in January 2002 when a government-endorsed report recognised it as a chronic and treatable condition.

Even so, while there have been changes in attitude both inside and outside the medical profession, those suffering from ME still fight a daily battle of ignorance and misinformation.

The problem is that a lack of consensus as to what constitutes ME means sufferers are often misdiagnosed or, worse still, dismissed as malingerers.

There's no test for ME. It can only be diagnosed by ruling out everything else and although it's not fatal and people do get better eventually, there's no known cure and it can take years to overcome.

Jo Calder, administrator of the Northern Ireland ME Association, said: "Every week I'm taking calls from people who either have ME or who think they might have ME.

"The youngest sufferer in Northern Ireland is eight while the oldest is a lady in her 80s. There is no barrier to age or social class."

Jo, herself a victim, has been working at the Association for eight years.

"I had about 20 symptoms," she said. "The cognitive symptoms were hardest to deal with - the loss of memory, etc."

Jo believes an extensive education programme is required in the province and that ME should become part of medical students' curriculum.

"It is a problem that is not going to go away," she said. "The medical profession are trying but there is no research being carried out.

"In the past GPs would not attempt to diagnose - now a lot of them are happy to do so. In the past people would laugh at the illness, but there is a lot more awareness now.

"Having said that, people who have ME still experience difficulty in the workplace."

Jo said that it was vital a new 'all singing, all dancing' centre was set up here to research the illness - and clear up much of the mystery behind it.

A letter has gone out to Ulster politicians to raise awareness of the illness and in an editorial for the Association newsletter, Jo said she wanted the same opportunities as fellow ME folk on the mainland UK.

"The Government recently announced that a total of £8.5m has been allocated to develop plans for 12 new ME centres on the mainland," it said.

"The centres will be staffed by specialists in ME/CFS. There will be 28 local support teams spread across the country to provide help for those adjusting to and coping with ME.

"The Health Minister (Stephen Ladyman) who announced these developments made a statement saying that Chronic Fatigue Syndrome/ME is a debilitating and distressing condition that affects people of all ages.

"These new centres and local teams mean that we can start developing focused local services that will make a real difference to people's lives.

"All those with ME in Northern Ireland will be very pleased indeed to hear that, at last, something seems to be happening.

"However, while the wrangling still goes on about the Northern Ireland Assembly, those with ME (no matter what their political affiliations or none) have NO money being set aside for their treatment and management.

"The one and only facility operating - the CFS Service at Belfast City Hospital - cannot provide the full spectrum of services that is needed."

You can phone the Northern Ireland ME Association 24-hour helpline on 90439831.

WE DISCOVER AN ASTONISHING FAMILY CONNECTION

'There has to be some genetic link with this disease'

IN 1996, a young Ulster woman and her teenage brother poured their hearts out to the Belfast Telegraph in an emotion-charged article about living with ME.

Eight years on, after tracking down Carolyne Hitchen and her younger brother Barry, we discovered an astonishing family link with the condition.

Not only does mum-of-three Carolyne (now 28) and Barry (24) still suffer from the illness, their youngest brother, Eamonn (19) is now a victim, along with Carolyne's nine-year-old son.

"There has to be some genetic link with the disease," Carolyne said. "I feel that area has to be full investigated.

"The fact that so many in the family have the condition needs to be explored.

"We all feel there should be more research done - more support for those with ME - and a greater understanding of the illness generally.

"Doctors should also be taught more about it."

Since 1996, when Carolyne's condition meant she endured a daily battle of fatigue and muscle soreness, there has been little respite.

Even worse, she has had to watch her young son's gradual decline in health - to the point where he had to be taken out of primary school.

Young Rian now attends Cedar Lodge special school in Belfast - but even then his condition has prevented him from attending every day.

"He spends the day, sometimes, on the settee," Carolyne said. "He has no energy and feels sick and sore. He also gets weepy and will often burst into tears."

In addition, because of his lack of energy, Rian has to be taken around on trips away from home in a wheelchair.

"My condition has not improved," Carolyne added. "I cannot take the kids to school. I have little energy. I could be bed-ridden for a couple of weeks."

Carolyne's dad, William, added: "I know they won't die from the illness but it is hard to see their health decline in the way it has."

'Yuppie flu' of the 1980s

THE origins of ME - or Myalgic Encephalomyelitis - can by traced back to the '30s when it was associated with polio outbreaks in the US.

The big 'explosion' of the illness in the UK took place in the 80s when it was incorrectly dubbed Yuppie Flu.

ME has a wide range of symptoms - physical and neurological - including general fatigue, muscle pain, clumsiness and disturbed balance and loss of short term memory.

Although one of the commonest chronic neurological diseases around, no official government sponsored statistical evaluation has been made.

Apart from two UK studies and one each in Canada and America, little information is available about the chronic aspects of the illness.

Many people with ME have no previous history of ME symptoms but their behaviour and even personality can change radically with the illness.

There is no cure and treatments aimed at various symptoms may help some patients but not others.

ME has no barriers. It can strike anyone at any time, irrespective of age, race or creed.

One of the highest profile sufferers is Clare Francis, solo transatlantic sailor and top novelist.

In an interview with the Belfast Telegraph several years ago she told how she first had ME when she was just eight years old.

Locally, leading TV presenter, Mark Robson, also suffered from the condition.

According to the Northern Ireland ME Association, children and teenagers are wrongly diagnosed as having "school phobia".

"They are then sent back to school too soon and cannot cope with their studies," the Association said.

In children and teenagers, sleepiness during the day is commonplace along with problems with hearing, smell and temperature regulation.

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