Health: Feeling tired and confused

A treatment for chronic fatigue syndrome has provoked a hostile reaction from sufferers. By Rob Stepney
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Indy Lifestyle Online
A year ago, Laura reached her lowest point. Utterly exhausted by a short walk, she was picked up off the pavement and taken home by the police. "My feet felt nailed to the ground," she recalls. With permanent flu symptoms, panic stricken and confined to a wheelchair, she was eventually diagnosed as having chronic fatigue syndrome, the term doctors now use instead of ME, or myalgic encephalomyelitis.

Laura, a 30-year-old marketing manager, has since made a remarkable recovery. She is now able to walk for an hour at weekends, swims 20 lengths three times a week and is contemplating a return to work. She puts her newfound sense of wellbeing down to a technique called cognitive behaviour therapy.

CBT aims to help people to understand how the beliefs they hold about themselves and others influence mood and behaviour - and how re-evaluating negative beliefs can help them to feel and behave differently. It has been successful in dealing with problems ranging from depression to chronic, unexplained pain.

Research shows CBT can also help people with chronic fatigue syndrome. Yet many sufferers are bitterly opposed to the treatment, arguing that their condition is physical, not psychological. Psychological therapy, they believe, implies that they are to blame and their disorder is not genuine.

Laura says that CBT helped her to change the way she thought about her problems without implying she was to blame for them. "Many people with chronic fatigue have a personality which hinders recovery," Laura says. "I was an `all-or-nothing' thinker and felt I had to be perfect in everything I did."

The therapy, she says, encouraged a less perfectionist approach to life. It also helped her gradually to build up more physical activity. "With my therapist, I agreed a defined amount of activity and rest, starting with five-minute walks each day," Laura says. "I got up at a set time and did not nap, which meant I had a better night's sleep. It seemed I increased my activity incredibly slowly, but I made steady progress."

Laura's experience of overcoming chronic fatigue does not stand alone. The British Medical Journal recently published results of a study that compared 30 patients given CBT with another 30 who received standard medical care. At the end of a year, more than 70 per cent of the CBT group had improved significantly, but this was true of fewer than 30 per cent of the controls. Patients who had CBT spent fewer days in bed, could walk farther and rated themselves as less fatigued.

"We are not talking about a cure," says Dr Michael Sharpe, the Oxford University psychiatrist who led the study. "Some people do tremendously well. Others we can't help, for reasons we don't yet understand. But the trial shows CBT improves the quality of life of many patients." Results of the Oxford trial have been replicated by a second study (soon to be published) from King's College Hospital, London.

Chronic fatigue syndrome blights many lives; one estimate puts the number of sufferers in Britain as high as 150,000. Until CBT, no form of treatment had shown much promise, so the new evidence that CBT helps should be widely welcomed. Surprisingly, it has received a lukewarm response from a source one might expect to be more enthusiastic. Last week's magazine published by the ME Association, which represents 9,000 sufferers, is grudging at best.

The magazine's medical editor is Stephanie Woodcock. She says of the Oxford study: "The full weight of `righteous zeal' exhibited by the therapists does not seem to have produced anything more than a perfunctory change at the margins of the illness." This conclusion is, by any standards, not a fair reading of its results.

This hostility toward what is seen as a psychological treatment is a legacy of the often acrimonious debate about the nature of chronic fatigue. Some doctors have clearly provoked hostility by denying a problem exists. "ME is an escape route for the middle classes," claimed one psychiatrist, who writes under the pseudonym of Dr Dalrymple.

David Polgreen, a CFS sufferer who took part in the Oxford trial and claims he did not improve, says: "Some sufferers have been extremely frustrated by `yuppie flu, all in the mind' comments over the years. Anything that sounds psychological rings alarm bells."

At the other pole are those who will countenance nothing but a physical cause for CFS. "This is an organic problem. There are clear disturbances of brain and hormone function," argues Peter Behan, professor of neurology at Glasgow University. "To claim cognitive therapy tackles the underlying problem is bunkum."

But this exclusive focus on finding an organic basis for the disease reflects two assumptions. The first is that what is not physical is not real. The second is that any involvement with psychology implies weakness. These assumptions are as dubious as they are strongly held. "Though they don't speak for the majority of sufferers, there are certainly some people who would rather see trials like that in Oxford fail," says Dr Simon Wessely, whose CFS research unit at King's College Hospital works on both psychological and hormonal approaches to the disease. Dr Wessely has received dozens of hostile phone calls and letters, despite his broad range of research. "The mere suggestion of anything psychological provokes an extreme reaction in some quarters," he says. Dr Richard Smith, editor of the British Medical Journal, which published the Oxford trial, has also been bitterly criticised for its approach to CFS. His wife was phoned by "someone interested in ME" who said her husband would be exposed as a rogue.

"It is claimed we are biased against the idea that CFS is physical. We would argue that mind and body are too intertwined for there to be any purely physical or purely psychological illnesses," he says.

Ann Hackmann is one of the cognitive therapists involved in the Oxford trial. "People who are against a psychological approach to CFS tend to think it implies they are inadequate. The truth is the opposite," she says. "These are strong people, but at times they push themselves beyond normal limits."

Another therapist on the Oxford trial is Dr Christina Surawy. "People with CFS tend to have been good at coping with life and success. Through no fault of their own, they encounter physical illness or other stresses which lay them low," she says. "They then have a lot of physical symptoms which they aren't used to and can't make sense of. Sometimes, in struggling to get better, they make things worse. Cognitive behaviour therapy can break the vicious circle."

Some names in this article have been changed. The author's wife is one of the therapists in the Oxford trial.

Trudie Chalder's book `Coping with Chronic Fatigue' (Sheldon Press), available on 0345 626747, is a good starting point for anyone interested in CBT. The ME Association can be contacted on 01375 642466.

CASE HISTORY

Sarah, a 42-year-old writer, found CBT the answer to her chronic fatigue.

"The illness started with a series of infections I never got over. I thought more sleep would build up my resistance, but I became increasingly lethargic, put on weight and my body ached. Within 18 months, I turned from someone who did 20 miles of speed-walking every week into someone who could not do housework or cook and had to confine family activities to the barest minimum.

The period when I had the infections was also one of job problems. But I pretended to myself it did not bother me that I was writing books nobody wanted to buy. A friend told me I was depressed but too stubborn to admit it. I had failed before and been able to deal with it. What was new was that I couldn't even give it a go.

I felt a huge rock blocked my path. I thought chronic fatigue was something visited on me by a mutant virus or vitamin deficiency.

The breakthrough with CBT was realising I wasn't the victim of factors outside myself. I could do things to effect change. But this realisation of power came about through an acceptance of my own limitations. During the slow recovery from my initial illness, I had acted like a well person when I was still unwell.

During therapy, I traded the image of the big rock for an image of a tangled ball of string with knots and twigs in it. I could tease away one bit and move on to something else.

I'm back to normal, but I take things easier than I used to. I could attack life at the same pace as before but I choose not to. Nobody wants to say chronic fatigue syndrome is definitely not due to a virus, for example. But in my case, that kind of thinking had been a dead end."

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