The younger ME generation

A new government report says that ME is a 'real and distressing' physical condition. But will that help the tens of thousands of children who suffer from it? Julia Stuart reports

Frances Goodchild hasn't seen her friends for 18 months. While they are at school or playing, the 10-year-old spends her time in bed with the curtains drawn. On a good day, she'll swallow a bit of boiled potato. It requires such an effort that she sounds as though she's choking to death. She can't sit up, and the hum from the fridge downstairs disturbs her. Her parents can't hug her, because it hurts.

Frances is one of an estimated 25,000 children in the UK who suffer from ME. Last week, to the relief of parents and sufferers everywhere, the condition, often dismissed as "yuppie flu" or as being all in the mind, was given official recognition by the Government. Describing the condition as "real, debilitating and distressing", Sir Liam Donaldson, the Chief Medical Officer, said that doctors could no longer tell sufferers that they did not believe in the illness. A Government-appointed working group has produced a report giving the first firm guidance to professionals on how to treat and manage the condition, also known as chronic fatigue syndrome, which affects both children and adults.

While Frances's parents, Kathleen and Jonathan, welcome the report, for them, in some respects, it has come too late. Not only have they had to deal with a chronically sick child, but they also came under suspicion from the authorities when they went to seek help.

Frances first became ill in September 1999. "I was walking with her in the park and she complained of a pain in her leg," says Mrs Goodchild, 47, a part-time music teacher. She and Jonathan, 43, a church administrator, live in St Albans, Hertfordshire. They also have a son, Matthew, who is 14. "She went to school the next day and that was the last day she went. I thought she had glandular fever – she had headaches, her glands were swollen, and she felt very tired and ill."

Her parents didn't think she was malingering. "She had no reason. She was a positive girl, and was very happy at school. She did Brownies, swimming, ballet, music lessons – she lived life to the full, although we had recently noticed that she had been getting tired easily."

Frances was referred to a paediatrician, who, according to Mrs Goodchild, said that her daughter met enough of the criteria to be diagnosed with chronic fatigue syndrome, but that further tests would be needed.

Frances started having home tutoring, but the family began to feel feel under pressure from the school and education authorities to get her back to the classroom. They soon found out why. Mrs Goodchild says the doctor had produced a report (passed to Hertfordshire County Council) that didn't mention the syndrome. When, in February 2000, Mrs Goodchild demanded to see the report, she was horrified: "He simply said that he was concerned that Frances's symptoms seemed to have been strongly enforced by her mother, and that her symptoms were being regularly rewarded," says Mrs Goodchild. "I felt terrible. I was angry and very disturbed by it." At this stage, Frances had a fluctuating low temperature, nausea, her neck glands were sore, and she suffered headaches and felt extremely tired.

A senior doctor at Frances's surgery then diagnosed her, and wrote to the school confirming her illness. It was also verified by a childhood ME specialist, Dr Alan Franklin. But the family's ordeal with the authorities wasn't over. "In September 2000, we got a letter from social services saying that they had had to make investigations under child protection legislation about us, and that they were closing the case. We didn't know anything about this. When we investigated, we found that, in July 2000, the head of the school had written a long letter to social services saying that she was very concerned about Frances – she felt that something very strange was going on and asked that they investigate. I was furious, horrified. Our doctor had been approached by social services and confirmed that the child was ill, so they decided to take no more action.

"We were appalled. We had a very sick child and suddenly we learnt we had been under suspicion as the cause of that child's illness. It made an already horrendous situation worse," says Mrs Goodchild.

In the meantime, Frances's condition was deteriorating. By April 2000, she had lost the use of her legs. "They just went, so she was going around on her knees," her mother says. Five months later, she could no longer even do that, and was confined to bed. Then she suddenly lost the ability to chew and suck, and had great difficulty drinking. She spent a week in hospital and was put on a feeding tube, which she continued to use for four months. She now drinks liquidised meals with a straw.

Frances has developed sensitivity to light and lies in a darkened room, though she does use a torch if she has the energy to read. She has also become very sensitive to sound. The family watch television using headphones and have stopped playing their musical instruments in the house. During the day, she speaks in a whisper, and doesn't have the energy to talk in the evening. She is visited by her GP every two or three weeks, and by Dr Franklin every few months. Despite her condition, she remains cheerful.

The family has been deeply affected. "We have developed strategies to cope, such as always shutting the kitchen door because the fridge hums so loudly," says Mrs Goodchild. "We don't have any visitors. Even our parents can't visit. We can't leave her with a babysitter. She has hyper-sensitivity of the skin, which means that we can't cuddle her. Matthew is coping very well, but family life is far from normal. Family trips are out of the question. We've been very depressed at times. It didn't help to have our integrity questioned. Her prognosis is good because she's a child. She should recover completely, but we don't know when."

Dr Alan Franklin, a retired consultant paediatrician, who was part of the Government's working party that produced last week's report, says that at least 50 per cent of long-term absentees from school suffer from ME. There are about a dozen children with it at each secondary school at any one time, and girls are more commonly affected. The condition lasts for about a year, but it may extend to several. There is no specific treatment, and most children get better on their own.

"We don't know precisely what causes it. A number of tests can be done, but none of them is totally reliable. The immune system is disturbed, but it's very different in every individual, so there's no consistent pattern," says Dr Franklin. This adds to the considerable problem of children being disbelieved.

"Some children may just be pulling the wool over people's eyes, but very few consistently complain of the same symptoms for a long period. If they are consistently ill for more than three months, I think that would be a fairly definite indication that there is something wrong."

Parents need to be observant, he says: "For example, school phobia is a condition that occurs to children who don't want to go to school, but during the holidays they are fine. Children with ME are just as bad in holidays and at weekends as they are on school days. Most children with ME are desperate to get back to school because that's where their friends are and they lose friends because they can't go out and do things with them.

"Children are frequently disbelieved, first by their family, who are then convinced they have a real illness, and then by their GP, who may be influenced by reports suggesting that a lot of it was psychological. It is not a psychiatric illness. It is a physical illness that has psychiatric problems associated with it."

Help for youngsters with ME can be found from Tymes Trust 01245 263482, Action for ME 01749 677551, and the Association of Young People with ME 01908 373300