'If an ME sufferer looks fine, the school assumes they are'

Rhia-Louise Nixon estimates that she was absent for between 40 and 60 per cent of her time at secondary school, right up to GCSEs, because of ME (myalgic encephalopathy, more often called chronic fatigue syndrome by doctors). It began, she recalls, when she was 11, soon after she had started at Hazeley Academy, near her family home in Milton Keynes.

“I got a virus. I didn’t really think much about it at the time. I just assumed I would get better, but then it wouldn’t go away. I lost co-ordination of my body and I even lost my eyesight for a time. My whole brain felt as if it was wrapped in cotton wool.”

It took a year for ME to be diagnosed, and that despite having a supportive family (her mother, Claire-Louise, went down to part-time working to concentrate on helping her daughter), a good local GP and a sympathetic paediatric consultant. Others have to wait much longer, some up to five years.

A good day, says Rhia-Louise, now 17, was when she managed to make it into class, perhaps not for the register, but in time to manage most of her timetable, despite near-constant migraines and the pains in her joints that are dulled by the 11 different sets of pills. And on a bad day? “My legs would just give way under me and I’d be on the floor and tearful. That’s when I couldn’t even get out of bed.”

She describes it all without a trace of self-pity. Indeed, she is telling me such details only because I’ve asked. She is taking A-levels at Hazeley – a mark, her mother says, of how flexible and encouraging the school has been.

But Rhia-Louise is one of the lucky ones, says Mary-Jane Willows, chief executive of Ayme (Association of Young People with ME). Without a formal diagnosis, other schools can refuse to see prolonged absences “as anything but truanting. Some blame the parents and call in social services.”

Rhia-Louise shakes her head as she listens to what others go through. Warm, articulate and smartly turned out, it wouldn’t cross your mind as she talks that there is anything amiss. That’s part of the problem, says Cath Kitchen, acting head teacher for Hospital and Outreach Education in Northamptonshire, a specialist support facility for youngsters whose education is being affected by health problems. “There is a disbelief around ME. If a pupil looks fine, the school assumes they are fine.”

The situation is further complicated by the fact that, according to Ayme, about 50 per cent of GPs still refuse to diagnose chronic fatigue syndrome, many because they are not convinced it exists. So while a diagnosis can be made by blood testing to rule out other conditions and checking against 15 symptoms listed by Nice (National Institute for Care and Health Excellence), for many it is still a long struggle that comes at significant cost to their schooling.

Kitchen recalls one girl she had previously supported who spent four years at home so debilitated by ME that she had to be hoisted in and out of bed. The student’s late diagnosis meant she went without educational support for much of that time. “It shouldn’t be about diagnosis,” she says. “Our first priority should be to ensure these youngsters have access to learning.”

The Children and Families Bill, now going through its final stages in Parliament, will set tougher obligations on schools and local authorities not only for how they treat pupils with chronic, long-term medical conditions, including ME, but also in spotting the telltale early signs of illness, rather than dismissing them as what Rhia-Louise light-heartedly refers to as “typical lazy teenagers who don’t want to get out of bed”.

The legislation anticipates that the sort of specialist support Rhia-Louise received will be available to anyone facing a similar situation, no matter where they live. During her worst periods, a teacher from Rhia-Louise’s local educational support centre in Milton Keynes liaised with staff at Hazeley Academy and then visited her at home to make sure she wasn’t falling too far behind.

“She would come about twice a week,” says Rhia-Louise, “and go over [classwork] with me. Depending on how I was feeling, we could spend two hours together, or 20 minutes.” At exam time, Rhia-Louise was supported by a scribe, who would write her answers for her, and a reader, and was given extra time to complete the papers.

But no allowances were made in marking the papers, she says – so she is all the more proud of the triple distinction she achieved in chemistry, physics and biology in her science BTEC (chosen, in preference to GCSEs, because the emphasis on coursework, rather than one-off exams, is better suited to her ME).

For sixth form, she will be taking three years rather than the usual two. “One of the things we have learnt,” says Kitchen, “is that youngsters with ME often need to do the same lesson three or four times over in order to retain the learning because of that cotton-wool feeling in their brain.”

Kitchen, who is chair of the National Association of Hospital and Home Teachers, says that Rhia-Louise could have been given more help with her exams. Kitchen is working with five students with ME and arranges for them to sit papers at home, in the presence of an invigilator. “Even the effort of getting up and getting to school can drain what energy they have, energy better spent on answering the questions. It is all about giving them the best possible chance to show what they can do.”

She is also an advocate of greater use of electronic learning options. “It is a bit contentious with some groups, but for us it has enabled young people to have lessons in the early evenings, or when they feel well enough, without them even getting out of bed, yet still be able to access their personalised education programme. It must never be used in isolation, of course, and requires careful monitoring and some 'real person’ contact time.”

Ayme estimates that at least 25,000 children of school age in Britain suffer from ME. And that number may be higher. Research by Dr Esther Crawley, a consultant paediatrician at Bath’s Royal National Hospital for Rheumatic Diseases, found that one in 100 students could be affected, with many, often with milder symptoms, simply not being picked up at all, despite the impact on their work and grades.

“The study focused on three large secondary schools and on the pupils there who had more than 20 per cent unexplained absence,” says Mary-Jane Willows. “Each was offered an assessment to see if they met the recognised criteria for ME. From those studies came the figure of one in a 100. It gives you an idea of the scale of the problem.”

How can such an epidemic be going undiagnosed? “Because schools don’t know what to look for and what support is available. The teachers are under such pressure and the school nurse network is stretched, with one nurse often covering as many as 20 schools. ”

The new statutory guidance that comes out in September with the legislation aims to stop such a waste of young potential. But in an age of austerity, with school budgets tight and the role of local authorities changing as more academies are established, is that realistically going to happen, especially since no new money is being pledged?

“If we are worrying about cost,” Mary-Jane Willows says, “then it should be the much larger cost we look at of allowing a youngster to go through school without a proper education, leave without qualifications, and end up without a job and needing to be supported by the state in the long term.”

There are pressing medical reasons for schools and local authorities to be more active: a report by leading national ME charities concludes that early diagnosis can enable the condition to be managed more effectively and enhance the prospect of a full recovery.

For Rhia-Louise that is still some way off, but she is convinced that the support she has received has helped to keep her on track. There have been some low points, she says. “I’ve always been in the lowest group at school in maths, with the naughty kids.” But there have been highs, too, including school trips – even if her friends had to hold her up on the way back. She has set her heart on university.

And her ME? “It’s still here, but I feel as if I am in control of it rather than the other way around,” she says.

ayme.org.uk