Arts & Culture
Ill-defined notions
Published 05 February 1999
Diseases are not what they were, and nor are their symptoms. Ziauddin Sardar examines the bitter controversies surrounding ME and Gulf war syndrome
Once upon a time, if you were sick, you were really sick. You had a collection of recognisable symptoms. These defined a disease whose cause was a bug and whose cure was a germ-killer. And if one of these elements was lacking, never mind: you placed your faith in medical research and hoped that soon the chain of identification, cause and cure, would be complete.
But that was then. Now if you are ill there may not be a "cause".You may be suffering from something but you may not be ill at all - according to the medical establishment, anyway. In spite of zillions of dollars and a sprinkling of Nobel prizes, the cancer bug has never been found; and it is not at all clear who is winning that "war". Moreover, we have a rising tide of diseases with no clear causes, such as asthma, which now afflicts one in four children. We also recognise now that the "cause" of some illnesses is better seen as a lifestyle than a pathogen. The taxable drugs, tobacco and alcohol, are indubitably mass killers; and the non-taxed drugs also destroy lives. Quite recently, officialdom has even recognised that "speed kills" - driving too fast is akin to having a deadly disease.
So diseases have taken on a postmodern dimension. There is a blurring of boundaries, confusion between real and illusionary, and a deadly game of wordplay. Sickness is no longer simply a personal matter; it has become social, political, bureaucratic. When is someone sick, really sick? Who decides? By what criteria and procedures? The only thing that is certain is that the patient him/herself has little power and cannot answer any of these questions.You are ill only when someone says you are ill.
Consider syndromes. Once this was a name for a precise collection of symptoms for which no clear cause had yet been found. Now it also stands for a bunch or bunches of symptoms lacking even the security of certainty that they are actually there. Most notorious is "chronic fatigue syndrome"; its symptoms can vary in intensity from frequently feeling tired to an intensity of fatigue, muscle pain and other disorders that are totally debilitating. At the far extreme, it is known as "ME" - myalgic encephalomyelitis.
From its first recognition as a large-scale problem about a decade ago, ME has been the subject of bitter controversy. Horror stories abound of people (some of them children) whom the medical and psychiatric experts considered to be just faking but who were suffering in a very real sense. Sceptics about the disease were converted only when it hit their nearest and dearest. The closest thing to a public lynching that I have seen happened on a live Esther Rantzen show on ME. It pitted a noted ME-sceptic, Dr Thomas Stuttaford, against a group of enraged sufferers. Stuttaford survived by the proverbial skin of his teeth.
Even though ME causes real pain, it still remains a "syndrome". The symptoms are difficult to classify. It could even be a group of diseases, and it is impossible to exclude emotional states from the causal picture. The same can be said of Gulf war syndrome, the latest addition to the growing family of syndromes, suffered by soldiers returning from the 1991 war against Iraq. Again, there are lots of nasty symptoms: mild to chronic fatigue, double vision, severe urinary and sexual problems, memory loss, joint and muscular pain - to start with. And there is an abundance of possible causes: exposure to pesticides and chemicals, the cocktails of vaccinations against anthrax and plague which soldiers were given, the anti-nerve agent tablets they were made to swallow, radioactivity from the "depleted" uranium used in shells and armour-plating, even the fumes from the burning oil fields. But even though 400 veterans have actually died and some 5,000 are suffering from illnesses related to Gulf war syndrome, the syndrome does not officially exist.
All the actors involved in this drama have their own perspective. For the veterans who suffer, it could not be more real. Researchers are concerned with finding causes, clinicians with cures, and the government with avoiding paying compensation at all costs. So one would expect the Ministry of Defence to deny the existence of Gulf war syndrome - and it does, operating on the simple basis of "no bug, no dosh". This is a safe wicket, as there is obviously no single bug associated with the syndrome. Of course, this makes life very hard for sufferers. They not merely have to survive their disease; they must also fight for elementary decency. And that is a long and bitter task in itself.
But what of researchers? Why should they deny the existence of Gulf war syndrome? The struggle over recognition hinges on research: will the cause be found? But this research is a totally different exercise from mainstream medical puzzle-solving, with double-blind tests looking for specified effects from specified substances. How do you investigate this mess of symptoms? Not with biochemistry, but with psychiatry. The new societal syndrome of syndromatic diseases requires a new speciality, a syndromologist.
Fortunately, one is to hand. His name is Professor Simon Wessely, consultant psychiatrist at the School of Medicine, King's College, London. Over the years, Wessely has been arguing that ME is a largely self-induced ailment that can be cured by the exercise programme on offer at his clinic. Recently he published the results of "the most definitive study" of Gulf war syndrome in the British medical journal the Lancet. Funded by the US Department of Defense, the study examined a random sample of 3,000 veterans. It concluded - surprise, surprise - that there is no such thing as Gulf war syndrome. There is only an increased frequency of illness: compared to soldiers who served in Bosnia, Gulf war veterans are about three times more likely to suffer from grinding fatigue, breathlessness, insomnia and other symptoms.
So Wessely, who occupies a key position in our socio- medical order, denies the existence of Gulf war syndrome, just as he denies the existence of ME. Clearly, he is a follower of Groucho Marx: "Whatever it is, I deny it." Not surprisingly, lots of people hate him. One Gulf veteran has accused him of biasing his supposedly random sample, excluding those who are really ill. A colleague from the States has come to Wessely's defence with suggestions that are more ludicrous than insulting, such as the possibility that the mere experience of fear of chemical attack has brought on these permanent and debilitating symptoms.
Yet what is the syndromologist to do? There are many different criteria and standards of proof involved in the problem. Do we use standard statistical tests on the mess of qualitative variables? If so, do we set the parameters to make the tests more sensitive or more selective? In the former case, we are more likely to miss nothing real, but more at risk of accepting something spurious. In the latter, it's vice versa; and a very selective test would show positive only if there was a bug lurking right behind. And there are the problems of selecting the sample, framing the questions and interpreting the answers. As Wessely's critics in the ME camp acknowledge, he is not a biased or shoddy researcher; there are serious difficulties with research methods themselves.
So syndrome-based illnesses confront us with problems where science cannot hide our commitments on issues of democracy and of values. Do the sufferers from a disease have anything to contribute to its understanding, aside from providing raw data for the experts' research? They are the ones who know how it feels, who can refine, describe and document the symptoms. If Simon Wessely is our syndromologist-in-chief, who has chosen and vetted him for that post, and by what criteria and procedures? Where is the debate over the shaping of such research? When will we recognise that health and disease are complex entities, where no single expertise is definitive? And when will we have the first officially sponsored study of such a problem which the sufferers do not have the occasion to call a whitewash?
Gulf war syndrome is not just repeating the history of ME; it is also recycling the history of Agent Orange. The Vietnam veterans fought for decades before the scientists and the politicians accepted that Agent Orange was anything but benign. Perhaps we can speed up the recognition of Gulf war syndrome by locking Wessely up along with suffering Gulf veterans in a live television debate. Come back, Esther, all is forgiven.
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