Many doctors still consider myalgic encephalomyelitis to be a psychological rather than a physical illness, thus making it difficult for some pupils to get support from schools. Jessica Werb talks to families and schools about their experiences and reports on steps being taken to raise awareness of the disease
Kirsty Strain, from Glasgow, is much like any other bright 20-year-old. Ambitious, fun-loving and personable, she is looking forward to pursuing a degree in acting and performance art after completing her first year at Langside College in Glasgow.
Every one of Kirsty's academic achievements has come after years of prolonged suffering. It was only through sheer determination that she managed to complete five out of her eight Standard grade exams at Bannerman High school. Her daily life is a constant struggle against the illness that she has been living with since the age of nine, myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome.
Kirsty is one of the estimated 15,000 Scottish patients with ME, 2,500 of whom are under the age of 20. According to the Association of Young People with ME (AYME) - of which Esther Rantzen, whose daughter suffered from the illness, is president - ME has become one of the leading causes of illness-related school absences.
A bewildering syndrome that has baffled and split the medical establishment, it is one of the most controversial illnesses of modern times. Its symptoms - which typically last for more than six months and often for years, include overwhelming fatigue, muscle and joint pain, migraine, dizziness, nausea and weakness. It has no known cure and treatment relies mainly on resting and avoiding over-exertion.
No one knows what causes it; some health experts maintain that it is a psychosomatic illness with psychological roots - so-called yuppie flu - while others have come to view it as a purely physical disease, likely caused by a virus.
The Scottish Executive set up a cross-party group six months ago to campaign for greater awareness of ME and research into the causes and treatment of the illness.
John McAllion, Labour MSP for Dundee East and chairman of the cross-party group, explains: "There is very little in Scotland at the moment in terms of understanding and expertise of ME. There is a problem with benefits because the Benefits Agency does not recognise it, and part of the National Health Service community says it's psychological and another part says it's a physical illness. We are trying to raise the profile of the illness in the Scottish Parliament."
Dr David Mason-Brown, honorary medical officer for the Edinburgh ME self-help group, explains that the medical community at large is still quite sceptical about the illness.
"One of the big problems with children is that many paediatricians in Scotland just don't believe in ME," he says. "Our health service is about eight years behind leading units in Canada and the United States when it comes to caring for patients with ME."
One consultant paediatrician who is convinced that ME is a physical illness is Dr Nigel Speight, from Durham, who has become the port of call for many Scottish sufferers seeking a diagnosis. Dr Speight, who works with many ME support groups, including Action for ME and AYME, says: "ME is very real and seems to be getting more common. Schools need to understand the illness. The challenge is that all teachers have to be taught to accept it and to be flexible. Time after time they try to force these children to over-stretch themselves and this can cause relapses."
Dr Trisha Taylor, an educational psychologist and trustee of Action for ME, emphasises that children with ME should not be seen as truants who simply can't be bothered to go to school.
"Every child I've spoken to with ME wants to be normal. They want to go to school, but when they try to attend full time they find that they cannot cope," she says.
Certainly for Kirsty attending school became increasingly difficult as she tried to cope with her illness and gain a diagnosis. She first showed signs of ME after suffering a severe viral infection at the age of nine. She was given a variety of diagnoses, from phobic anxiety to migraine, before ME was acknowledged eight years on.
"By the time I was 14, I was only attending school for about 28 per cent of the time," she says. "Because I didn't have a diagnosis of what the problem was, there was very little explanation that I could give the school and very little they could offer me by way of assistance. We were so busy trying to find out what was wrong with me that education took a back seat to my health."
At its worst, Kirsty's illness included nausea, joint pain, severe fatigue, food intolerance and sensitivity to light and noise which made sitting in a classroom difficult. At one point she was bed-bound for a number of months.
"My primary school was as supportive as they could be, but in high school I almost felt like I was wasting their time," she says. A lot of work was done with the family by guidance teachers and other support services in the school as well as outside agencies, though at that stage Kirsty had not been diagnosed as having ME.
"I only got tutors at my house about three to four months before my final exams. I felt it was too little too late," says Kirsty.
For pupils who are diagnosed earlier, things can still be difficult, as the Grant family of Invergordon can attest.
Christopher Grant developed ME after a tonsillectomy two years ago. He attends South Lodge Primary, and while his mother, Siobhan says the school has been as supportive as it can be, she claims the council has so far refused home tutors for her son, despite his only being able to attend one third of his classes.
"Christopher went from being a happy-go-lucky child to being constantly tired with excruciating pain all over his body," she explains. "His school work went down dramatically. It took the school about a year to accept that ME is a serious illness, though his class teacher was superb helping me, and now the school couldn't be more helpful. His headmaster is fighting for him to get one-to-one tuition."
For its part, Highland Council states: "Where a child is out of school for health reasons, the situation is carefully monitored by the school, which in the first instance will provide work to be done at home. Additional support may be allocated to the school where it is felt appropriate, bearing in mind the capacity of a child who is off school due to illness to carry through curricular work."
A similar story is told by Jennifer Girdwood, whose 15-year-old daughter has had ME for four years. Shirin, who also developed the illness following a tonsillectomy, attends Dumfries Academy. She was finally diagnosed by a paediatrician at Dumfries Royal Hospital in 1997 and by a representative of the ME Association, says Mrs Girdwood.
"The academy has been brilliant," she says. "When Shirin is not able to go to school they send work home for her and she is able to phone her teachers. But the education authority is not providing any tutors for her, even though she attends less than 50 per cent of her classes."
In response, Stuart Beck, head of education (children's services), says:
"We have clearly laid down procedures for home education and if medical opinion is that a child is unable to attend school we would provide home education.
"No request for home education was made to the authority because of the sporadic nature of Shirin's absence, and after consulting with Mrs Girdwood, the school and she agreed it would not be in the girl's interest at that time."
Shirin has just gained eight Standard grades, four at Credit and four at Foundation level, thanks to a lot of effort not only by herself but also by school staff and a local authority Easter school.
"There have been other cases, though," continues Mr Beck, "where we have had differences of opinion, where the parents' view is that their son or daughter has ME but our community paediatrician does not agree."
Central to these cases lies the failure of the medical establishment to come to a consensus about the causes and treatment of ME. With the chief medical officer in England set to publish a working party report on the subject shortly, changes in attitude will likely follow. John McAllion, for one, is confident the issue of ME will soon be treated seriously in Scotland's political and medical spheres.
"It's only recently that the pressure has started to build," he says. "Authorities don't have enough money for proper provision and they have to fight for resources, so we have to put pressure on education and health ministers and on the health boards. When the report comes out, the pressure will mount."
AYME, tel 01908 373300 www.ayme.org.ukAction for ME, tel 01749 670799 www.afme.org.ukME Association, tel 01375 642466
Tymes Trust, tel 01245 263482
Glenwood High School, Fife
"In my time here we've had one 14-year-old boy who most definitely had ME. He ended up repeating his third year of studies with us after going on a reduced timetable and having work sent home for him. However, his attendance had deteriorated to a level where even that wasn't working any more. We had a lot of contact with his parents and we agreed that he should repeat a year. That has been very successful.
"We had another couple of cases that may well have been ME. After a period of poor attendance and slowed progress, they overcame it. The doctors were never willing to put that label on it for them.
"We got what information we required ourselves through reading and talking to parents and doctors. I do think official guidelines would be helpful,because it's something that does seem to be on the increase. We should have more information about it."
Linlithgow Academy, West Lothian
"We've not had a tremendous amount of cases of ME but we had one girl four years ago who suffered from it quite badly.
"Her illness started in her second year and we tried to take the pressure off. We reduced her timetable and made provisions for her to have somewhere to lie down if she needed to.
"She missed an awful lot of school but eventually sat a couple of subjects with us.
"We received information mostly from her parents, who kept us aware of the problem, and we were quite happy to go along with their wishes.
"I'm not sure whether you could have official blanket guidelines for dealing with ME because you have to deal with each pupil individually, but it might be useful to have some basic information on the illness. It can be very frustrating because you're never completely sure that what you're doing is the best you can do for the pupil."
Blackhall Primary, Edinburgh
"ME is not something that is prevalent in our school but we have had children who seemed to have something like it, though they were not diagnosed.
"We had a Primary 6 boy last year who had a post-viral illness but nobody diagnosed it as ME. He attended school on a part-time basis for a while after his doctor advised him to attend only half days if he didn't feel up to a full day.
"In a primary school you know all the pupils and you just have to be aware of any changes in a child's behaviour. I'm not sure official guidelines would be terrifically important. I'm not feeling a lack of information about ME and we always hand it over to medical people. The local authority has always been receptive to needs of all sorts. They do provide health service people and I don't think there's that much more that they could do."
Inverness High, Highland
"We have had one pupil with ME and we had an arrangement where the local authority provided out-of-hours school tutors who took work to and from school for her. She became ill in another school and transferred to us. She was doing her Higher grade courses at the time and she was gradually able to come into school full time at various stages in the year.
"At the time there was a lot of information in the media about ME so we were well aware of the condition. Occasionally we get pupils who are not well for a while and in every case we've been able to provide educational support from ourselves and the local education authority. You have to treat each case individually, as you find it.
"We have a guidance document on ME from the local authority from a few years ago and if I came across another case I would consult it again."
Dumfries and Galloway
Head of education (children's services)
"We've known about ME and the difficulties that come with it for a number of years now. In my experience the presentation of the illness varies widely and, like any childhood illness, we could always use more information.
"Given that there's confusion within the medical profession about ME, that can create confusion in lay people, including educationists. If a position on the illness can be agreed on, then that would help the education service and schools to respond better to the various forms that the illness might take.
"As it is, if it is thought that a child has a medical condition that is having an impact on learning, then we would take steps to ensure that the disruption to education is minimised. We do not enter into the debate over the causes or treatment of the illness."