The trouble with myalgic encephalitis (ME) is that it is easier to say what experts don't know about it than what they do.
They don't know its cause. They don't know how it will develop: which symptoms are key and which are peripheral. They don't know which treatments work best. They don't understand its effect on the brain. They don't know how long it will last or how often it will recur.
Some of that uncertainty may soon change. Recent brain scans show physical abnormalities in the neurochemistry of ME sufferers. The World Health Organisation has ceased to classify ME as a psychiatric disorder. Britain's chief medical officer reported in 2002 that far from being all in the mind, ME is a chronic, disabling illness, that is recognisable and treatable.
Recently, the government launched a network of specialist regional chronic fatigue centres to diagnose and treat the condition. The Medical Research Council announced an evaluation, reporting in 2008, of which of the three main treatments - cognitive therapy, graded exercise, or rest and pacing life's demands in very small steps - worked best.
Meanwhile, charities are campaigning for early diagnosis, arguing that now ME is a clearly-defined physical illness an official label would protect children from suspicions they are skiving, chaotic, socially inadequate, school phobic, or simply lacking the backbone to pull themselves together and hand in their homework on time.
IGNORANCE AND MISTRUST
The trouble with new certainties is they take a while to replace old ones, says Professor Basant Puri, ME expert at the Hammersmith Hospital, London.
"I still see patients whose GPs say this is a psychosomatic, hysterical illness," he says.
If doctors lag behind the latest medical knowledge, it is hardly surprising some teachers do. "We have cases where the GP writes to the school saying the child has ME, but the school doesn't believe it," says Jane Colby, director of Young Action, an ME campaigning charity. "The school says this child is school phobic or neglected; get her in here or we'll take you to court."
Schools and families grappling with ME are dealing with a lot of history - as well as today's high-profile issue of attendance. (Children with chronic fatigue account for 51 per cent of all long-term school absence).
Some teachers, feeling pretty sick and tired themselves, tend to be unsympathetic to illness generally, and sceptical where the presenting symptom is fatigue, says Hilary Tandy, education adviser to young people's ME charity, AYME.
At the same time, parents can be terrified by this inexplicable, unpredictable illness and may over-protectively refuse to allow their child to do anything at all. Some children become bed-bound, and even tube-fed, for years, though most begin to improve within six months.
UPS AND DOWNS
The problem is compounded by the unpredictable nature of ME. Children may be white-faced and horizontal one day, bouncing around the next. "People like things to be cut and dried, but this is not a cut-and-dried illness," says Jane Colby.
Reaction to over-exertion is often delayed. Teachers see an apparently healthy child, and then get a phone call the next day reporting a child whose incapacity they cannot see. It would be so much easier if the child could show an X-ray of a broken leg, says Hilary Tandy. "There may be this horrible period where no one is sure what's going on. No one knows if they should be pushing the child or sending them home."
Parents and children may welcome a home visit by a friendly, not investigative, face from school, she adds. They can demonstrate the child is really ill, negotiate on home territory, and feel a little less isolated.
That was the experience of Brenda Rourke, matron at Ousedale School, a 12-to-18 comprehensive with 1,750 pupils in Newport Pagnell. In 1998, a cluster of eight pupils with ME entered the school. "Some parents invited me to visit the home, to see the child wasn't just lounging around," she says. "They didn't need to prove anything to me, but I think they felt they did."
Ousedale is now experienced in dealing with ME, says Wendy Page, the special educational needs co-ordinator. But, at first, the individualised, unpredictable nature of the illness made the learning process very hard.
"I think parents expected not to be believed. There were times when I felt I couldn't do anything right. If I arranged something special, the children didn't want to be different. If I didn't, they wanted it. I think it was the most difficult thing we've ever had to handle."
WHAT SCHOOLS CAN DO
Experts stress the importance of believing the child. Give the child the benefit of the doubt. If they are not sick, it will show sooner or later.
If they are, pressure and disbelief will at best increase their isolation; at worst prolong their exhaustion.
A sensitive teacher may be first to spot the condition, says Jane Colby. "A good teacher will say every time I try to get this child to do something she's ill two days later; she can't concentrate, she feels sleepy, she has terrible pains, she's white as a sheet. An alert doctor will think, 'Ah, ME.'"
Another clear indicator is absences every few days or weeks. In fact, schools may need to review their regular absentees with ME in mind, says Bath paediatrician Dr Esther Crawley. British and US prevalence studies suggest one pupil in 100 may have ME, half of them boys. Yet, doctors see one child in 1,000, and five in every six are girls.
"Boys don't say my neck aches, my head hurts, I'm really tired, because that's not what boys do," says Crawley. "I think there are a lot undiagnosed."
This early stage is the point where child and family can begin to get cut off from the school, says Hilary Tandy. Robust, individualised communication systems are crucial. Who will take responsibility for keeping in touch with the child and parents? Who will encourage the child's friends to visit them at home, even if teaching or pastoral staff do not? Who will make sure letters and homework are not only organised to reach the child, but actually do?
Legally, any child who is absent from school for more than 15 days for medical reasons must have their educational needs met. Planning that provision is the responsibility of the school and local education authority.
In practice, provision is often patchy, sometimes non-existent, says Hilary Tandy. Good school communication means the Senco or year head will set up and monitor systems whereby at the very least each teacher forwards ordinary homework to the child, marks and returns it.
Depending on the child's energy, the length of the absence and whether local authority home tutors are involved, some teachers will suggest textbook chapters to read or supply additional work, so the child falls behind as little as possible.
It is asking a lot to expect staff to provide individualised work, says Brenda Rourke. But they are more likely to do so if they and their pupils are educated about ME. She and Wendy Page gave talks to Ousedale staff and pupils about ME, emphasising the tangible symptoms - joint pain, sleeplessness, temperatures, mental fog and exhaustion - as well as its unpredictability and lengthy duration.
"Other students complain that students with ME don't get up till 11 and spend hours sitting around. What I tried to get them to understand was that it doesn't matter when these students go to bed: they feel rubbish all the time," says Rourke.
She saw fellow pupils being immensely welcoming and supportive of ME suffers. Former Ousedale pupil Carly Webb agrees that when ME took her away from school, many were helpful, but some were not.
"It was just normal 13-year-old stuff, but I was tired and on the edge, so it felt amplified. I would go in and get greeted with 'Hey, lazy bitch.'
People asked if I was pregnant, if I'd give my baby ME, if I was going to die."
AYME is making a video aimed at educating students in secondary schools. It also produces an education pack for teachers. Both can be ordered via the web address below.
The charity also holds details on the Government's new clinical centres: education welfare officers and schools should be able to refer pupils directly to them without the need to go via GPs.
HOW TO HELP
No national organisation runs ME training, but paediatricians at the regional centre of excellence in Bath offer workshops open to staff from schools elsewhere. (Contact Dr Esther Crawley for details. See resources.) There are many practical ways schools can help students with ME keep their education going, at least partially. They can: negotiate a reduced timetable, change classrooms to the ground floor, put chairs in corridors, allow pupils to leave lessons five minutes before the rush, offer transport to and from home, provide a quiet rest area, set up buddying and support systems, and organise special arrangements for exams.
Wendy Page admits that this can put immense demands on a school. Some Ousedale pupils took their GCSEs at home, with a school-supplied invigilator who would arrive at 9am, and stay sometimes for the whole day while the child got up, waited until ready, and took the exam with 25 per cent additional time and rest breaks as required. But even then many students are unable to cope with school.
Doctors are increasingly aware of the cognitive confusion associated with ME, says Crawley. "These children have problems with short and long-term memory. What I hear over and over again, particularly related to maths and science, is that they learn a lesson on Monday, go back on Tuesday and can't remember a thing about it. They also have a short concentration span: you can see them zoning in and out while you're having a conversation."
Add to this the hypersensitivity many sufferers experience to bright light and sounds from several sources, the fact that they are distracted by pain and lack of sleep, and that their mood may be low, and the true difficulties become clear.
BACK TO NORMAL
Gradual rehabilitation, with targets set by the child, and no stigma if they are not achieved, may deliver success, Crawley says. If everyone sees a child gradually but successfully building up: first studying at home, perhaps from a base of five minutes a day to an hour, and then steady reintegration at school, again moving slowly (no more than a 15 per cent increase per week), then they are less anxious that the child will never return to school.
Once in school, the answer to the environmental and learning problems may be practical: quiet rooms and learning support assistants. "We've just started a year-long project with teachers, home tutors and educational psychologists, looking at what the actual learning difficulties are and what support might overcome them," says Crawley.
The educational outcomes for students with ME are poor. A third end up without qualifications. Many schools, no matter how hard they try, worry that they gave in too easily to student or family despondency. "I would ask these students: 'What subjects do you want to do in Year 9?' and they would say: 'I don't know if I'll be able to do anything," says Wendy Page. "I still wonder if some of them would have done better if I had pushed them a bit more."
But, as Esther Crawley admits, no one knows how to cure these children quickly. "Until we do, we can't say to the parents we know best. Because often we don't," she says.
TRAINING AND RESOURCES
* Action for ME children's website: www.a4me.org.uk
* Association of Young People with ME:www.ayme.org.uk
* Young ActionTymes Trust: www.youngactiononline.com
* Contact Dr Esther Crawley at Department of Paediatrics, The Royal United Hospital, Combe Park, Bath BA1 3NG
* Karen Gold has won Epilepsy Scotland's Journalist of the Year Award for her feature in TES Extra for Special Needs about helping pupils with epilepsy.