The secret fears of the ME generation

People with Chronic Fatigue Syndrome are certainly sick. But why do they insist that their illness is purely physical?

Suzanne Moore
Thursday 22 May 1997 23:02 BST

Tense? Nervous headache? Feel listless, too tired to move? Can't get yourself to work? Then you are not alone - you are part of the Me generation, the growing ME generation. You are the new plague carriers, though no one as yet is claiming that ME is infectious.

The largest ever study of ME shows that CFS (Chronic Fatigue Syndrome) is responsible for 51 per cent of long-term absence among schoolchildren.

Chronic Fatigue Syndrome is democratising itself. It is reaching epidemic proportions - no longer the province of the stressed out super-exec or the driven thirtysomething. It has mutated into an illness that anyone can get, young or old.

Stress, after all, is the late-20th-century affliction. And before you all start writing in to complain that ME is real, and not to be treated as a kind of shirking, let me just say that, yes, I believe it is real. What I fail to understand is why the reality of this illness has to be substantiated by insisting that it is a physical illness. If ME were entirely psychological, would that make it somehow a fake illness? Of course not. It is just that because of our British insistence on the mind/body split it is very important to ME sufferers themselves to prove that what is going on is not all in their heads.

To say something is all in the mind is regarded as an insult: ME sufferers are making it up; they are not properly ill, and not properly deserving of sympathy.

The more we know about the complexity of the relationship between psychology and physiology, the less we should insist on describing illness as belonging purely to one sphere or the other. A more holistic approach is required, though at the moment we are very keen on biological rather than cultural explanations of behaviour. Thus everything from homosexuality to intelligence is put down to nature rather than nurture.

Various explanations are given for the causes of ME, including polluted water, viral infections and physical changes in the brain. The syndrome is not usually diagnosed until the sufferer has been chronically fatigued for more than six months.

Patients often say that their illness is caused by a virus. Doctors are not so sure. ME sufferers have usually at some point confronted a disbelieving doctor. Some even go as far as to suggest that once the symptoms of multiple sclerosis were also deemed to be without an organic basis, and that one day ME will be recognised as a serious disease .

It is not correct, however, to call it a disease. A disease is a manifestation of illness for which there is a medical explanation such as a bacterium. Chronic fatigue is a syndrome, in other words, a collection of symptoms for which the cause has not yet been found. The presentation of such symptoms for this syndrome began in the mid-Eighties. Patients turned up in doctors' waiting rooms, often with sore throats and enlarged lymph glands, complaining of feeling tired. Incidentally, the second most common cause of all trips to the doctor is precisely this: feeling tired all the time.

To ask why this syndrome should appear in the mid-Eighties is not to dismiss the distress of its sufferers. But we should remind ourselves that this was also the time when we started to become very scared of viruses. Aids, which also started as a syndrome with an unknown cause, had symptoms that were clearly observable. Unlike ME it also killed people. Viruses, though invisible, got into computers and into our bodies, and no one could do a damn thing about them. Every infection was viral; anybody could be struck down at any time. The prevailing metaphor was control, yet we could be brought down by a tiny enemy within.

Yuppie flu - as it was once called - appeared alongside Sick Building Syndrome at a time when work became the focus of identity, the supreme demonstration of control. Suddenly there were people too sick to go to work, but they were not lazy or malingering; they had been brought down by an unknown virus that stopped their hectic lifestyles. To read a connection between this new-fangled syndrome and the culture is not to dismiss ME, it is to try to understand where it came from. We accept that certain illnesses belong to certain periods. Right now we are in the midst of another largely hidden epidemic - that of eating disorders. To argue that this has something to do with an increasingly visual and consumerist culture is not considered to be outrageous.

However, the idea that ME is a late-20th-century form of hysteria is controversial. This is Elaine Showalter's thesis in her book Hystories: Hysterical Epidemics and Modern Culture (Picador). ME sufferers seem to share a desire to find an organic basis for their illness. Their self- esteem depends upon it, because psychiatric illness - even depression - is not seen as a proper illness. To say something is "all in the mind" has connotations of triviality, moral weakness and femininity. The word hysteria itself derives from the Greek word for uterus.

In order to be sick one needs to legitimise one's illness, and that means that a physiological basis is always a better form if legitimisation than a psychological one. Hysteria, according to Showalter, mimics the culturally permissible forms of distress. If in the 19th century repressed emotions returned via hysterical displays of explicit sexuality, what is returning with a vengeance in the late 20th century is something more deeply repressed than sexuality. Now that we must be boundlessly energetic and active, we find ourselves with an epidemic of lethargy.

The story of ME - for epidemics are spread by narratives as well as viruses - needs to spread itself by attracting patients into its community. It needs to be sanctioned by authority figures - sympathetic doctors who agree that this is an organic illness. It needs unhappy, vulnerable patients who would prefer not to see their symptoms as emotional, but as biological and therefore beyond their control. Add to this a supportive cultural environment of pressure groups, and celebrities who also suffer from ME, and you have a full-blown epidemic.

We do not need to worry about whether ME is a real illness or not. It has a devastating effect on people's lives. If more than half the children who stay away from school for long periods claim to have it, then obviously ME exists in some form in the real world. As Dr Simon Wessely, a historian of psychiatry, says, "What lies behind CFS is neither a virus, nor psychiatry, but our idea of what constitutes a real illness, what doesn't, and what we do to make something real."

Some doctors believe that CFS should be treated by physicians rather than psychiatrists in order to maintain the patient's self-respect. They understand that such patients may have a stake in seeing their illness as a viral condition. They are also prepared to accept that there is a viral trigger involved.

Yet as long as we live in a culture that does not respect the psychological, emotional or circumstantial causes of illness, then we will carry on looking for viruses, real or imaginary, to explain why so many of us feel so sick and tired of life. Will that make us any better?

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