Children with chronic fatigue syndrome (CFS) who leave their beds, start to exercise and are supported by parents who acknowledge the psychological dimension of this debilitating condition, recover faster than children who are encouraged to give way to their symptoms.
Dr Josie Brown, a consultant child and adolescent psychiatrist with Southampton Primary Healthcare Trust, told delegates that a daily timetable, with regular exercise, and structured sleeping times for children with chronic fatigue syndrome was vital to recovery.
Dr Brown works at Bursledon House, a unit for young people up to the age of 17 run by psychiatrists and paediatricians and with a school on site.
“We discourage daytime napping, give them a graded exercise programme and introduce some time at school,” said Dr Brown. “This is crucial to success and enables young people to get some kind of sense that they are in control of their lives, which would have spun out of control when they were admitted to hospital.”
Children with CFS often woke at midday, snacked and cat-napped through the day, and went to bed late. They had little or no structure to their day, and this, said Dr Brown, compounded their symptoms.
Sleeping and resting only made matters worse, as with backache,. With each day spent in bed, 3 per cent of muscle bulk was lost, bones thinned and joints stiffened. Children fell behind in their schoolwork and lost both their friends and their confidence.
“It’s important to break the link between the symptoms of chronic fatigue syndrome and fear of activity,” said Dr Brown. “It can be a slow process – sometimes taking weeks or months – but there will be improvement.”
While there are no randomised controlled trials that this graded exercise therapy works with children, there are two studies which show that it substantially improves measures of fatigue and physical functioning in adults with chronic fatigue syndrome.
Between 50-100 children per 100,000- two thirds girls to a third boys - come to the attention of doctors suffering from chronic fatigue syndrome, but experts believe many more are not seen by the medical profession.
Many parents believe that their child’s condition was caused by a virus and that rest was the answer, Dr Harvey Marcovitch, a consultant paediatrician and a member of the government’s working party on CFS told delegates. This rigid belief, and the idea that their child would get better only when a “cure” was discovered, was a barrier to recovery, he said. Children whose parents felt that the cause of their child’s illness has a psychological element had a greater chance of recovery.
Professor Elena Garralda, a child and adolescent psychiatrist at Imperial College, London, agreed. She said it was important to give parents a clear diagnosis that underlined the fact that CFS had real physical symptoms and that it was not depression, anxiety, anorexia nervosa, school phobia, or psychosis.
Nevertheless, it did have a psychological dimension, and children with the condition were often perfectionists, setting themselves higher than normal standards for academic attainments and physical activity. She regarded it as a stress-related disorder, coupled with a real fear of activity.