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.
Source - Times