They say rest is what keeps you ill
You get flu - that's normal. It's February: people cough, have sore throats, headaches, feel exhausted. You go to bed for a day or two, then most of the symptoms go away, leaving you just feeling tired. After another few days, the fatigue goes away, and you get back to normal. Or not.
If you are among the unlucky few, you will continue to wake up tired. Exercise seems to make it worse, and you may also have a variety of other symptoms such as headaches, muscle pains and a feeling that your brain is stuffed with cotton wool.
This could be just the start of a long, difficult time, during which you will first of all search for a diagnosis, fighting against accusations of laziness and rejecting diagnoses of depression. It will be at least six months, maybe years, until at last the words Chronic Fatigue Syndrome, or Myalgia Encephalomyelitis are mentioned. It feels like a relief. Finally you can tell people what's wrong with you, you can stop undergoing blood-tests, x-rays etc, and at last you can start on a course of treatment.
But no, this is only the beginning of another search, this time for a therapy which will make a difference, and a way of living you can cope with. The truth is that doctors cannot agree (that's medical-speak for don't know) what causes chronic fatigue, why some people get it and not others, and how they get better.
For me, it took four and a half years, the whole of my university career, to recover from what seemed at first like a mild viral infection; and one of the most frustrating aspects of the ordeal was the inability of doctors to pin down the cause of my illness, and therefore to attempt to cure it.
After a year or so, I had learnt that any exercise left me exhausted, so if I had to exert myself, I went to bed straight afterwards. One of the difficulties of the illness, which didn't help to convince onlookers of its reality, was its unpredictability: going for a short walk might make me feel better one day, and then the next week it might be impossible to walk half that distance. Add irritability and an inability to concentrate to the fatigue, and it is not surprising I also became depressed.
As time passed, the therapies I was prepared to try got more and more off the wall: antidepressants, homeopathy, cold baths, exclusion diets, I tried them all. Most of them made me feel better for a bit, and then I would relapse into the morass of fatigue. Living away from home (I was at university in the UK), did not make things easier, though the college authorities did all they could to make my life bearable.
I stayed in bed for longer and longer. I learned to avoid anything exciting or demanding. I learned to say no when my friends suggested jolly parties which would have left me in bed for days afterwards. My life narrowed down to the bare necessities, in a concentrated attempt to get my degree.
In the end, I did manage to graduate - partly thanks to support from tutors, family and friends; partly thanks to a consultant to whom I was referred a few months before my finals.
I had resisted to this move, because this was a psychiatrist who believed chronic fatigue was the result of learned habits of body and mind which conspired to keep me in a state of helplessness. Like most people, although I echoed the usual pieties about psychiatric illness being nothing to be ashamed of, I was reluctant to put piety into practice. Even more upsetting was the idea that four years of physical suffering were being denied, written off as psychosomatic.
This doctor's technique was called cognitive behaviour therapy - I had to write this term up on a notice-board in my bedroom to familiarise myself with it. Cognitive behaviour therapy, or CBT, is used to treat all sorts of problems, including chronic back pain and addiction. It involves an in-depth study of one's behaviour patterns, attempting to identify habits which contribute to the problem and then a programme of systematically changing that behaviour.
It works for chronic fatigue because, according to cognitive behaviour therapists, the more you rest, the harder it becomes to return to normal life. This is because of a cycle which quickly builds up where you feel tired, so you rest; this makes you feel better, so you take exercise, perhaps more than is warranted by your recovery.
This makes you more tired, so you rest for longer. Very soon, you notice that exercise exhausts you, so you avoid it. This makes your body even less used to doing anything, so when you do even something very simple, it tires you out.
CBT tries to eradicate the association of exertion with rest, as well as negative thinking about illness. Put simply, the doctor told me not to carry on until I was tired, and then rest, but instead to plan when I would rest, and then plan what I would do during the rest of the time. He asked me to follow a graduated programme of exercise, and to challenge any destructive thoughts which might come into my mind, such as "I'm never going to get better".
My experience was of a doctrinaire therapy which claimed to be able to "cure" chronic fatigue syndrome regardless of the cause of the illness: it felt to me (and still does) frighteningly close to saying it was unnecessary, and all in my head. On the other hand, it gave me a feeling of control over my own life for the first time in four years, and an unsteady improvement in my health became a gradual but steady progress, which led to my eventual return to normal life after about eight months.
In England, it now seems to be quite common for GPs to refer chronic fatigue patients to cognitive behaviour clinics, but in Ireland the situation seems to be slightly different. For CFS sufferers, of whom the Irish ME Trust say there are some 10,000, it is unlikely to be an option, even though most of the health boards would have someone on their books trained in this technique. Many doctors are unfamiliar with the illness, let alone all its possible treatments, and so very few ME patients even hear of cognitive behaviour therapy.
One Dublin psychiatric ward has the facility to treat approximately 10 chronic fatigue sufferers, as inpatients. This is for people with a very severe form of the illness - they are likely to be bedridden or wheelchair-bound, and they will spend up to a week in hospital during which a cognitive behaviour therapist will assess their condition, both physical and mental, and work out a programme for recovery.
In spite of its location, this programme does not point the finger at any one cause of illness: patients are simply taught to manage their illness physically and mentally, and thereby halt the cycle of increasing fatigue and declining morale.
The success rate is hard to quantify, partly because only extreme cases usually make it that far, but a paper is currently being researched which attempts to put some figures on it. In the meantime, I was told approximately 70 per cent of patients who attempt CBT in Dublin follow up on the initial assessment, and that a further 20-30 per cent achieve a complete recovery, as measured by the ability to return to full-time employment.
The Irish ME Trust cautions that this treatment is not for everybody, and certainly my own experience was not of a miracle cure, but the simple principles of illness management can be useful for anyone suffering chronic illness. A sympathetic GP would be able to refer patients to cognitive behaviour therapists, although few have any specific training for chronic fatigue. Or, if you want to work alone (perhaps after years of illness you are fed up with doctors!) there is a short book which lays out the principles of cognitive behaviour therapy, together with guidelines on self-management of CFS. It is called Coping With Chronic Fatigue by Trudie Chalder. If you are tired all the time, if you have problems concentrating and pains in your muscles; if you feel as though someone has taken away your brain and put in cotton wool instead, don't despair: most people do recover, and there are things you can do to help yourself. One of them might be cognitive behaviour therapy.
Coping With Chronic Fatigue by Trudie Chalder is published by the Sheldon Press at £5.99