'ME is like living in a glass cage'

It is an illness which has only recently being recognised as a medical condition among adults, let alone children.

Sam has suffered from the illness since the age of four but was only diagnosed last July. For him the illness means spending breaktime indoors rather than tearing around the playground and going straight home at the end of the school day rather than joining his friends on the football pitch. He has to pace himself.

Sam, of Stoneleigh Park Road, says: "I would like to play football but I get too tired. I wish I could play with my friends."

But Sam is one of the lucky ones. Some youngsters, like 18-year-old Vikki George, from Strathcona Avenue, in Bookham, become so ill they are bedbound.

Vikki says: "For the past year-and- a-half I have not been able to sit up, walk or go downstairs. I have been paralysed for days on end in my bedroom and sometimes I can't even manage to open my eyes and focus."

Vikki has had migraines for the last eight years but was only diagnosed as suffering from ME a month before her 16th birthday.

She says: "The doctors first put my problems down to growing pains and then unhappiness at school. But I was begging them to make me better so I could go back to school."

Paralysed

There is no cure for ME so Vikki relies on strong headache tablets and takes each day as it comes.

She added: "When I wake up each morning I am completely paralysed.

"I can't understand English or recognise my parents' voices. Gradually I am able to wiggle a few fingers and open my eyes but it takes me a long time to focus. Slowly I get back some more of my movement. Some days I am able to crawl to the toilet but other days my parents have to wheel me in a wheelchair."

Despite this debilitating disease, Vikki remains amazingly upbeat.

She says: "I am pretty sure I will get better and get back to relative good health. I hope to become a doctor eventually. I can't plan I just have to take each day as it comes."

And that seems to be the way most sufferers deal with ME. Both Sam and Vikki have to pace themselves and not overdo anything.

Sam's mum Sheila says: "This Saturday we want to go to the farm. It means I need to make sure he has a quiet few days beforehand so he will be well enough to go and not too tired."

The hardest thing for both Sam and Vikki is that on the surface they appear well. They are not in plaster or hooked up to tubes.

Katie James, the grants and projects worker for the Association of Young People with ME (AYME), set up to support young sufferers, described how isolated children can become.

She says: "Many of them compare the illness to being in a glass cage. They can see out and people can see in and although they look fine from the outside they are totally restricted in everything they do. It is like being in a prison for them."

Many groups have been set up in the UK to support people with the illness including Action for ME, a national charity campaigning to improve the lives of sufferers.

It has recently published a report which claims ME costs the UK £3.5 billion per year in medical costs, benefit payments and lost earnings.

A spokesman for the charity says: "This doesn't even begin to count the human cost of ME, which devastates the lives of 240,000 people in the UK. Virtually no research has been done to find answers to this complex condition. The charity has set up a campaign to put pressure on the Government to set aside £35million for research into the illness.

The spokesman adds: "£35million is just one per cent of the cost of ME and it would mean scientists could at last begin a dedicated research programme in the UK."

ME is classified by the World Health Organisation as a disease of the nervous system. It is characterised by a variety of debilitating symptoms. People with milder cases recover within a year or can function at a reduced level but many people remain chronically ill for years and some never recover.

The Government estimates 25,000 children aged between five and 18 suffer from the illness in the UK. But patients and their carers have found getting a diagnosis in the first place is half the battle.

Sheila says: "Sam became seriously ill with a high temperature when he was four and was taken into hospital.

"They tested him for everything childhood leukaemia, muscular dystrophy and it was only last July they finally, by elimination, diagnosed ME.

"If I had known when Sam first became ill he had ME I wouldn't have pushed him into doing things but we just thought it was a nasty viral infection and he just needed a bit of a push and some exercise. Now we know what is wrong with him it is no wonder he couldn't cope."

Sam suffers from tiredness, disturbed sleep patterns, a sensitivity to noise and light, throat infections, headaches and wobbly legs. He also gets what his family have termed brainfog.

Says Sheila: "Brainfog is the name we give when Sam just completely forgets the word for something. The other day he couldn't remember the word for tomato sauce so it became red squidgy stuff. It sounds funny but Sam got very frustrated with himself for not remembering it."

Leaps and bounds

But Sam's life is not as miserable as it used to be. At first he was only able to go to school for a few hours in the morning. But he has come on leaps and bounds in the last few months and is now able to last the day.

Sheila says: "I am so pleased he loves his new school, Auriol Junior. That is a big social thing. So even though he can't go and play with friends after school I am happy he is at least going out and mixing with other children his own age."

Auriol Junior School, in Vale Road, has helped Sam a great deal. It has a resource base for hearing impaired children and many of its classrooms are acoustically treated which means Sam can cope with the noise.

Sheila says: "In his old school Sam found it very hard to cope with a classroom full of 30 other children. He would hide under the table to get away from it all. For him all that noise was like going Christmas shopping with a really bad hangover. Now he is happy."

Sam still has his bad days when he can't move his legs or has an infection, and his mother agrees it is hard to try and develop a balance between being a protective parent and giving him freedom.

Sheila says: "I don't want to come across as over-protective but at the same time I want to keep him on a good level, particularly when he is as well as he is now."

The family relies on the support of AYME which was set up six years ago to support young people with ME.

Katie James says: "It is a fantastic link for young people to discuss and understand what is happening to them and lets them know they are not alone.

"A lot of children with ME lose their friends so we do a lot of work setting them up with pen-pals and email buddies and organise workshops which they can attend if they are well enough."

Feelings

Both Vikki and Sam are members of AYME, which is free to join. Every two months the organisation produces a magazine, Cheers, and in the latest issue Vikki has published some poems which reveal her feelings towards ME. She said: "Raising awareness is so important. So many people think ME is just about being tired but it is so much more than that. For me every aspect of my body is messed up and nothing works normally. But organisations like AYME, brainfog and patchwox are a real help to people like myself."

A number of organisations have been set up to help children suffering from ME.

They include The Association of Young People with ME. Telephone: 01908 274 136. Other useful contacts are http://www.brainfog.org which keeps patients in touch with each other and http://www.patchworx.org, which is for anyone under the age of 20 with an illness or disability.

May 30, 2003 12:00