The disease that makes everyone an expert

In the absence of a known cause for chronic fatigue syndrome, the illness has become an arena for our fears and anxieties - get CFS and you are labelled a failure
Click to follow
The Independent Online
Suppose the Duchess of Kent had cried off from her engagements with pneumonia. Or multiple sclerosis. Would the Today programme have roped in several doctors to debate her illness? Would the newspapers have used the Royal ailment as an excuse to debate the disease? Hardly.

Had she announced she was HIV positive, eyebrows would have been raised. But otherwise no other illness sets people salivating as much as chronic fatigue syndrome, the illness she has been diagnosed with.

The popular and media appetite for debates about CFS seems bizarre. It is easy enough to understand why sufferers might be interested in the causes and cures, but why does everyone else have such a stake in it? The illness itself is incredibly boring - month after month of sofa-bound inactivity. Yet public interest seems endless. In the absence of a conclusive cause, CFS has become the playground for professionals and the public to parade their passions and anxieties. The arguments that take place on the television, in the newspapers and in the pub are more about ourselves and our fears than about the illness itself.

Take the doctors' disagreements. At the moment the illness is up for grabs. Anyone in any discipline can take a shot at it. A form of depression or mental illness, say the psychiatrists. Consultants in infectious diseases suggest a virus. An allergy, say other specialists. Researchers in every field are approaching it through their own disciplines and finding they have something to say.

It doesn't mean they are all right. Just think what doctors would be saying about Aids if no one had discovered the HIV virus. We would have been told it was the result of mental illness, lifestyle, immune deficiencies, lots of different viruses, or (from the homophobes) a visitation from God. Keen to keep the peace, the Royal Colleges of Physicians, Psychiatrists and General Practitioners would have told us the illness was multi-causal - just as they did with CFS in October.

Psychiatrists in particular have an interest in capturing CFS for themselves. For decades they have struggled within the medical establishment to justify their discipline. If they could convince the world that CFS belonged to them, just think what a coup it would be. Then everyone would have to accept that mental illness has demonstrable physical consequences. And with high-profile sufferers like the Duchess of Kent and Clare Francis, they would make a great stab at tackling the stigmatisation of psychological illness too.

All things considered, you can understand why they ignore the physiological evidence about differences between depression and CFS., and the determined claims by sufferers that there is nothing wrong with their mental well- being. Most important of all, it is easy to see why they gloss over the statistics that show that CFS sufferers are no more likely to get depressed than people with any long-term illness - being ill for ages is miserable.

So that's the experts. But what about everyone else? Why, for example, is The Times GP, Dr Thomas Stuttaford, so determined to believe the illness is a mental disease? He isn't a psychiatrist. He doesn't seem to have a personal axe to grind or an agenda to push. So why is he so convinced when he has no conclusive evidence to back him up?

And he isn't the only one. Journalists, family, friends, work colleagues - we're all as bad. When someone tells us they have ME, our eyes widen and our minds close. We don't know what causes the illness, but rather than suspend judgement until the conclusive evidence finally arrives, we sway with preconceptions and prejudices - and, most important of all, defence mechanisms.

For that's what this is all about: fear. The thought of being struck down for years on end, condemned to a 12-month hangover or a 24-month bout of flu is pretty scary. How much easier it becomes to handle if we can tell ourselves it will never happen to us - because that illness is someone else's fault.

You have CFS because you are depressive, neurotic, unstable, unbalanced, incapable of dealing with your life - all things that I am not. Therefore I will not get CFS, and hence I feel happy again. Or, if depression won't work as an excuse, how about stress? You have CFS because you can't handle stress, or because you work too hard, or you pushed yourself into it. I am calm, cool, collected and in control over my life, therefore I won't get ill.

So the epithet "yuppie flu" really caught on during the Eighties. Most of the population who were not yuppies were relieved to blame a strange illness on the ridiculous working habits of the young and ridiculously rich. Even yuppies themselves could dismiss the illness as something which struck "would-be-yuppies" who couldn't hack the pace. Describing CFS as a lifestyle disease is a nice way to package it up and cope with it, all the while maintaining the myth that ill-health is a failing, something we can always act on and resolve.

Practitioners and enthusiasts for certain forms of alternative medicine perpetuate the myth even further. Telling us we can heal the soul within, that if we just take the right approach to our lives we will recover and be in perfect health, they actually increase the pressure on people who are ill.

Not only do you have to have a successful career and family, but you also have to be super-healthy too. Fall ill and you are a failure, because illness is something super-people know how to avoid. Fall ill with CFS and you are definitely a hopeless case, who got your lifestyle entirely wrong.

If we could get away with it, we would doubtless explain away other illnesses in the same way - as the sufferer's fault. AIDS visits the promiscuous, heart attacks hit bad eaters, lung cancer attacks smokers. Illnesses that seem truly random - we don't know who gets them and why - are too terrifying to contemplate. And they disrupt our view that we can control everything in our lives.

Avoiding stress, eating well, taking exercise and being happy all keep us healthy, of course. But by aspiring to dismiss CFS sufferers as people (different from ourselves) who haven't quite found the key to a healthy life, we are taking things to extremes. People are polarised into healthy people handling life well and victims who just can't get a grip.

Sadly many CFS sufferers, and the people who speak up for them, only make the polarisation more pronounced. By portraying themselves as victims, appearing always to be lamenting the way the world treats them, they only confirm the healthy in their views. Esther Rantzen is the worst possible spokeswoman for CFS. Sad-eyed and with a catch in her voice, she could be parading the cause of lost puppies, mugged old ladies, orphans or CFS victims. And all of it is sickening to everyone else.

No other illness parades its sufferers in this kind of way. Where the cause is known, agreed, identified, sufferers don't need to agonise and the healthy don't need to accuse.

Eventually someone, somewhere will come up with conclusive evidence about the causes of CFS. Then the illness will subside from public view, and no one but sufferers and their relatives will pay much attention. CFS will be a professional and social football no more. What a relief that will be.

Comments