At 13 Leo has become used to people asking how he is and recalls his recent response to a friend’s inquiry. “Ask me on a Tuesday . . .” he says affecting the Scottish brogue of David Walliams’s strange hotelier in Little Britain. This is the kind of joke that teenage boys like, but for Leo it is a clear sign of progress because a year or so ago his response was very different.

“Do you know, what I hate more than anything else is when someone asks, ‘how are you feeling?’ It’s kind of a rhetorical question, but I don’t feel fine and I hate telling them that because you don’t know how many times I’ve had to say . . .”

This thought, unconcluded and delivered in a croaky and weary voice, forms part of an audio diary that Leo kept throughout much of the time he has suffered from ME (myalgic encephalitis, otherwise known as chronic fatigue syndrome). On Friday parts of the diary can be heard on Radio 4 in Leo, Rusty and ME, which tells the story of his illness through his voice and contributions from his parents (both broadcasters), his sister and the professionals who have helped him. At times it is unbearably poignant to hear the family struggle to endure his deteriorating condition, but it is instructive, too, because ME has long had a bad press.

Five years after the World Health Organisation (WHO) classified it as a neurological disorder, it is still little understood. There is no clinical test to diagnose it, no definitive treatment and no cure. The suspicion that those who claim to have it are malingerers who just need to get a grip persists, yet it is known that it commonly affects high achievers and it is now thought that one in 250 of us will have it at some point. As many as 25,000 children in the UK are thought to suffer from it every year.

Leo became ill in November 2005, a day his mother, Jane Ray – who produces the programme – remembers vividly. He had had a chest infection but seemed to be getting better so the family took him to a Harry Potter movie.

“At the end he looked at me and said, ‘Mum, nothing works, I can’t move’. It was as if dementors had swooped over him and scooped him out.”

Ray does not exaggerate. Over the months that followed Leo’s body ached, he had fearsome headaches and described his tiredness as violent. He found swallowing difficult and lost weight rapidly. Much of the time, he slept. Tests for glandular fever and Lyme Disease at the Whittington Hospital in North London were negative and it was not until January 2006, when Dr Andrew Robins, Leo’s consultant paediatrician, diagnosed a postviral syndrome (this was classed as ME three months later) that the family felt they had reached a turning point. “We knew what we were fighting against and stuff like that,” says the admirably succinct Leo.

His mother is more expansive. “Treating ME is the medical equivalent of watching paint dry,” she says. “The usual NHS view is that there’s nothing they can do to treat it, they just manage the symptoms. But here we had an [NHS]consultant paediatrician who was prepared to say, ‘I will see you every week until he’s better. You won’t be passed from pillar to post, and I will get a team together that will support your care’.

“In a practical way that saved us from wasting thousands and thousands of pounds, as other people have done, on crank cures and snake oil and new therapies that seem to attract people who are bewildered and desperate.”

Robins’s collaborative approach to Leo’s care was designed to support his physical, psychological and emotional needs simultaneously. The team consisted of a nutritionist, a physiotherapist, and Robins’s colleague, Dr Sebastian Kraemer, a consultant psychiatrist. “It was quite clear to me when I first saw Leo that it wasn’t going to be possible to do all this on my own,” says Robins.

“ME isn’t well understood but there seem to be threads of good practice and it seems to make sense to coach the young person with their family and give them a programme where they can be given space to get better over a longer time course than most people would appreciate. There is a problem in certain models in medicine. Instead of working in parallel we think in series and the physician gets to the end of the line and says, I’m sorry, I can’t do any more for you, go and see a psychiatrist. That’s often traumatic for everyone involved because they don’t necessarily feel that there is a psychological issue and feel abandoned by the medical side. We are saying that there are psychological issues and there are physical issues and we’re going to look at them together. In a world of limited resources it’s expensive putting two consultants in the same room for an hour, but it is definitely worth it in certain situations. The work we do for Leo’s family isn’t just me or just Dr Kraemer, it’s the product of the two parts.”

Kraemer remembers meeting Leo and finding a child so tired that it was as though he had been woken in the middle of the night. Realising that Leo is highly imaginative, he suggested that he come up with a name for his symptom. Leo came up with “Rusty” and gave the name to his whole body “because it was like a rusty gate, doesn’t work properly”.

The idea behind the technique is to distance the patient from his symptoms so that he can look at them and think about them separately, Kraemer explains. “If you can look at what’s happening rather than suffer from it you’re more likely to be its master rather than it being your master. It helps people to use mental devices against an unseen enemy, if you like. We’re not claiming that any of this is curative – ME is tiger country – but a lot of children do get better and the objective is to make sure that happens as speedily as possible and not to let anything get in the way – such as wrong kinds of treatment or staying in bed all the time.”

Leo did spend a lot of time in bed and had many remissions and relapses. He lost so much weight that the hospital suggested that he should be fitted with a feeding tube. He didn’t like that idea, started to eat a little more and his weight stabilised. He recorded his wheelchair speeding down a hill and notes drily that when he crashed, his mother was more concerned about the well-being of the recording equipment than her son. Then his friend Curtis told him about a neurolinguistic programming technique called the Lightening Process. Leo was keen to try it, and Robins and Kraemer felt that his enthusiasm meant that the timing was right and that the technique could give him another way of taking control of his condition. As a result of the sessions Leo came up with the image of packing his ME into his wheelchair and abandoning both of them.

“Some of it is positive thinking,” he explains. “Saying I’ve got ME, so it sounds as though I’ve currently got ME, not I always will have. Things like that, really.”

He no longer has a home tutor and has returned to school part-time, and he has started to draw again. His mother finds some of his cartoons to show me. Leo cringes with embarrassment.

We eat the rock cakes he has made, he frets over his hair, but as he gets used to the agony of speaking to a stranger in front of his parents he starts to open up.

His body uncurls, his back straightens, his hands unwind and you begin to see a teenager who no longer looks ill. I admire his sweatshirt.

“The ultimate in cool – being dressed by your mother,” he quips.

“You can do your own shopping now, mate,” she says.

— Leo, Rusty and ME, BBC Radio 4, Friday 11am

Extract from Leo’s audio diary

April 17 2006: “It’s the night before my birthday. I’d like to be excited but I’m not. I’m dreading my birthday to be honest. I thought I’d be feeling better.”

April 18: “It’s my birthday. My stomach woke me up but I went downstairs and flung the door open and it was nice because there were balloons and everything. I opened my cards and then my presents. I got a few very funny cards, good presents. I thought we’d go go-karting but then Rusty had a bit of a bad turn just before, which was inconvenient. I was knackered. We sang Happy Birthday with my birthday cake and then I went to sleep and that was it. I mean, it was good but it was – well, I’m proud of what I did, but I’ve never felt more tired ever.”

Facts about ME

Myalgic encephalitis (ME): myalgia is muscle pain; encephalitis is inflammation of the brain and spinal cord. It affects an estimated 150,000 people a year.

Symptoms: long-term tiredness; poor short-term memory and muscular pain.

Treatments: no cure. Mild sufferers can care for themselves and may take odd days off work. Severe sufferers rely on bed rest most of the day. Some may experience intolerance to noise and light. Cognitive behavioural therapy, antidepressants, nutritional guidance and alternative therapies have all shown to be helpful.

Source: www.nhsdirect.nhs.uk

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