Sarah Rigby

Last week I walked home from Shepherd’s Bush Green. It isn’t far – people who come to visit say it takes them about ten minutes – but it felt like a considerable achievement. I haven’t been able to walk that far since I’ve lived in this part of London. It wasn’t just that I could cover the distance – at a push I could have done that six months ago – but I didn’t have any pain in the days which followed, which was an indication of how much I’ve improved. Two years ago, when I first moved here, I couldn’t comfortably walk from one room of my flat to another, and when I tried to ignore the pain and go further, it always got worse.

At that time I didn’t make a link between using muscles in the normal way and the pain in them increasing. In fact, I had very little idea what was happening to me. For three months, taking increasing amounts of medication, I’d been struggling to live normally, but just after I moved my GP suggested that I stop taking painkillers, which he felt were dangerous if used for an extended period. Without them, I had to stop working. Every step I took sent waves of pain up the right-hand side of my body (for some reason the pain was always worse on the right side) and I had severe and constant headaches in my temples and at the base of my skull. The other symptoms I’d had since having flu in March continued: swollen glands, a constant sore throat, night sweats, dizziness, bowel disturbances and temperature fluctuations – I was also unusually thirsty, hungry and tired. I was sleeping for about 14 hours a day but was exhausted while I was awake; I was eating more than usual but within three weeks had lost a stone and a half in weight, and couldn’t put it back on for more than a year. Later I developed blurred vision in my right eye, tinnitus in my right ear and recurrent insomnia. More frightening than any of this was the fact that I found it very difficult to concentrate: when I tried to read, or to listen to the radio, I often couldn’t keep the meanings of the words in my mind for long enough to make sense of a sentence.

Unless they’ve known someone with the condition, most people wouldn’t recognise these as symptoms of what one consultant I saw described as a ‘textbook case’ of ME, or Chronic Fatigue Syndrome. In the last few years the illness has attracted a great deal of publicity – partly because it’s still very controversial, partly because it affects so many people (approximately 150,000 in the UK). There’s disagreement about what the condition should be called, about how many people have it, about whether there are subgroups within the Syndrome, but most of all about what it is and whether or not it exists. Many people I meet have a view on whether it’s a genuine illness or not, but strikingly, hardly any of them even have a clear idea of its symptoms. The three most common opinions about ME are that it doesn’t exist at all, except in name; that it just involves feeling slightly more tired than usual; and that it’s a psychological illness.

The Chief Medical Officer, Kenneth Calman, announced on 16 July that a new working group is to be set up to help GPs deal with ME, which he recognised as ‘debilitating’ and ‘a real entity’. This should go some way towards dislodging two of the more common assumptions from the minds of doctors, though public opinion will be slower to change. The third – that ME is a psychological illness – continues to be contested. Matthew Hotopf, of the Institute of Psychiatry, recently described ME as ‘a grey area’. Appearing on ITV’s Link, Hotopf said: ‘The main thing about ME is that it cannot be understood by any single biological or psychological mechanism. You have to have an integrated approach which takes both into account.’ On the same progamme, Ellen Gouldsmit, a psychologist with a special interest in ME, argued that ‘we must start distinguishing between the various fatigue syndromes. The literature doesn’t make sense if you treat CFS as one disease ... The evidence is overwhelming that it isn’t. There are some groups where physical factors like the immune system are involved, and they’re not being looked at.’

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