Seen But Not Heard: One Teen’s Struggle with Chronic Fatigue Syndrome

In the upstairs bedroom of a house in Glasgow, the windows are covered with black-out curtains. It is a typical teenager’s bedroom, but there is no sound, no television or radio. The light is permanently switched off.

This is Heather McLean’s room, and it is where she has spent the last few years of her childhood. Unable to sit up for longer than half an hour, she is unable to bear the pain of having her hair brushed or her teeth cleaned. The slightest chink of light hurts her eyes. Even the sounds of everyday life outside make her tremble.

Heather, 15, from Shawlands, suffers from severe Myalgic Encephalomyelitis

(ME) – chronic fatigue syndrome. It leaves many bedbound, suffering crippling pain, exhaustion and concentration loss. Figures across the UK suggest that there are thousands of sufferers in Scotland, yet there is not a single consultant in the country dedicated to the speciality. There is no clinic for those hit by the condition. Many patients are simply referred to psychiatrists. In order to get a diagnosis, Heather’s parents had to send samples of her saliva to a doctor in the United States.

Cases of ME have risen in the last ten years. Crucially, for a condition once dismissed as “yuppie flu”, cases are on the rise among children. But even though an estimated 25,000 children are affected by the condition in Britain, many think of it as an adult illness. Some doctors still do not believe in it at all.

Speaking from their home, Linda McLean, Heather’s mother, comments: “Children with ME are non-people, living in torture day in, day out. People just do not know they exist and the medical profession just does not know what to do with them. My daughter used to love gymnastics and ice skating. Now all she can do is lie in bed and hope that one day she might be back on the ice. It may be that she never manages it.”

Heather was just 11 when the first symptoms of ME emerged. It came to light after she was struck by a series of viral illnesses that progressively broke her health. In the last two-and-a-half years she has been imprisoned in a darkened room. She is forced to wear ear plugs because her nerves are extremely sensitive to noise. As a result, her brothers have to wear headphones when they watch TV.

But these are not the only problems. Heather’s whole body aches and she often suffers tremors and jerks. She is so exhausted that she cannot sleep. “I think we are now entering a difficult phase with her,” saysMcLean. “She is expressing her thoughts and feelings. She is beginning to appreciate what she’s missing. I don’t think many people would have borne the suffering she has been through. She has a positive outlook and is hoping to recover. I have also adopted a positive outlook but maybe she is going to be one of the ones that never recover.”

The biggest problem for children with ME is getting a diagnosis, says Dr Nigel Speight, a paediatrician specialising in the condition at the University Hospital of North Durham. He sees children from Scotland because there is nowhere for the families to turn. “ME has been recognised in this country for the last 40 years but it is a taboo area in the medical profession. There are some doctors who do not even like using the term ME. There are others who do not recognise the condition or think it is hysteria of malingering.

“The chief medical officer of England has recently published a report saying this sort of attitude is no longer acceptable. But many doctors are scared that if they come out and publicise the fact that they do recognise the condition they will be flooded with patients.”

Morven McDade, from St Andrews, Fife, is on the brink of adolescence. She likes to wear fashionable denims. She dreams of owning a horse. But Morven’s childhood ended when she was five. Within weeks of coming down with what seem little more than a sore throat she was bedridden, in pain and misery. Her body ached, she had abdominal cramps, severe itchiness, double vision and sleep disturbance. GPs and specialists failed to make a diagnosis.

When her mother Helen suggested her daughter’s symptoms might be ME, she was dismissed. One doctor wondered if she or her mother were simply seeking attention. It was even once suggested her symptoms were brought on by an aversion to school.

Years later, Morven has good and bad spells. At the moment, she manages school one or two afternoons a week. When she can’t get to sleep she lies in bed, her condition punctuated by the hourly news bulletins on the radio. She also makes up stories. “I’m quite lucky because I have a good imagination, so I just think up stories in my head,” she says.

Morven has missed out on the things every other child takes for granted. She has never been to swimming lessons, gymnastics or music lessons. Until recently, she was a member of a Lone Guides pack for children unable to go to Guides.

McDade, 43, says: “I had always assumed ME was not an illness that affected children. When I first wondered if children got ME, I read a mother’s account of her eight-year-old daughter’s illness. I stood there, tears running down my face, thinking, ‘but Morven is only five – at least she was eight. It can’t be’. It can and it is. It took us nine months and three Scottish hospitals before I insisted on a referral to a consultant in England.”

The McDade family’s search for answers took them to Dr Speight, who has around 220 children with ME on his books. He readily acknowledges that cases of the condition are on the rise, but will not comment on why.

Others, however, firmly believe that the causes are linked to environmental factors and that increasing cases of autism, attention deficit disorder and allergies among children are a warning that in some way we are slowly poisoning ourselves with dangerous cocktails of pollutants, chemicals and even vaccines aimed at preventing disease. “The medical profession and the government prefer to maintain a cosy illusion that these things have always existed, and are a reflection of defects in these families, not our society,” says McDade.

But you allow yourself to wonder – what if they are wrong? What if children with ME are the canaries of our society?

Her worries are echoed by Jill Moss, the director of the Association of Young People With ME (AYME), who says that statistically there is now one child with the condition in every secondary school in the UK. “There have been no epidemiological studies, so these figures are just an extrapolation,” she adds. “There is a huge amount of research going on now into the causes of ME, but scientists are working in their own areas so there are no real facts.

“ME is becoming better-known as an illness, so we would naturally see more cases. However there are more cases and there are even clusters of the syndrome in some areas. This was unheard of ten years ago. We need to find out why this is happening and help sufferers manage their symptoms. Genetic and environmental factors have been mooted as causes but we really do need more research.”

At a recent debate in the Scottish parliament, the Conservative MP Alex Fergusson – whose son Christopher, 15, has been unable to attend school because of ME – launched a motion calling for the executive to recognise the “growing incidence among both adults and children”.

A parliamentary cross-party working group is currently investigating ME in Scotland and a short-term action group has been set up to help shape future treatment. Rhona Barton, a 24-year-old ME patient and member of the group, says she hopes to see progress in the next few months. “One of the main problems is obtaining benefits and the right sort of care, so the action group gives us something to work with. But the main point of the chief medical officer’s report was that ME must be taken seriously, which is right. It is a long, slow fight but I feel we are now being listened to and people are beginning to take notice.”

(c) 2002 The Scotsman

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