RECENTLY, a boldly pronounced judgment on the chronic debilitating illness we call ME. He declared that those patients were imagining their illness. His comments, which received wide media coverage, rode roughshod across the lives of many an afflicted patient. Some had the strength to challenge his comments but many were too ill (or disillusioned) to fight back. This is for them.
Fatigue, in varying degrees of severity, is a universal experience. At any one time, some 20 per cent of men and 30 per cent of women will admit to feeling tired all or most of the time in the preceding month. It is not surprising, then, that one of the most common complaints brought by patients to their doctors is one of constant fatigue.
The doctors' response to such patients, in the words of an observant Lancet editorial, is frequently one of frustration and helplessness; doctors know the bewildering variety of causes, the many psychological factors, and the prevailing impotence of medical treatment.
It is true to say that every published study of the subject points to an association between fatigue and psychopathology, mostly depression and anxiety. But it is equally true to say that psychological factors by no means account for all cases of fatigue.
By way of illustration, I shall quote liberally from international research as we follow the fate of 100 hypothetical patients referred by their doctors to specialists for the investigation of chronic fatigue. These people have a fatigue that is adversely affecting their quality of life. Those who can are pushing themselves through the day only to collapse upon their return from work; they try to conceal their fatigue from employers and friends; they cancel social engagements; their intimate relationships are under strain; and they are increasingly frustrated by the inability to pursue former interests.
We also know that fatigue is a frequent component of psychiatric, symptomatology, and at times the forerunner of overt psychiatric disease. We would confidently expect, therefore, that between 60 and 70 of our 100 patients will be correctly given a psychiatric diagnosis. Of these, the vast majority will be found to have a depressive illness.
A few will be identified as generalised anxiety disorders, and there will be a handful of hypochondriacs, or, as we prefer to call it nowadays, somatisers (those who have a genuine experience of symptoms being felt in the body (soma) but whose true origin lies covertly in the psyche). In addition, one might expect an occasional case of manic depression or schizophrenia to be discovered.
Reassuringly, only 4 or 5 per cent of our fatigued patients will be found to suffer from a physical disease, such as multiple sclerosis, malignancy, or the like. That leaves us with what one reviewer described as an `irreducible minority' (some 25 per cent) of fatigued patients whose fatigue cannot be explained by either physician or psychiatrist.
THESE brave doctors, at least, have avoided the scientific trap: a dark place where otherwise brilliant minds are limited by an over-dependence on their machines. They have said: "we can find nothing that we recognise, therefore you are suffering from something we cannot explain with our current knowledge and technology". This is a mature response, and far better than the indefensible "we can find nothing wrong, so it must be in your head".
Psychiatric diagnosis must be made on the basis of positive evidence of psychiatric symptoms, and should never be allowed as a dumping ground for patients who do not fit known paradigms of disease. It is a failure to honour this tenet of medicine that results in the profession's most common mistake: the assumption of psychological illness in the absence of physical signs of disease.
On the other hand, it is an indictment of our so-called open society that psychological "diagnoses" are still stigmatised, still viewed as an inherent weakness of personality, and still resisted so strongly by some among us who suffer great inner pain. It is imperative that those who are suffering from a psychological "illness" be identified as such, and equally, that they themselves embrace the truth.
Failure to do so will result in chronic "disease", and they will never emerge into a healthy place. Correct attribution, then, is of the utmost importance, but it works both ways. I would suggest that the incorrect attribution of a physical disease to psychological causes is just as damaging for the patient as the converse.
But let me come back to that wonderful expression, "an irreducible minority". It has a certain quality about it. However hard we may try, we cannot explain it away. This group of patients is not about to disappear. In acknowledgment of the "existence" of this chronic debilitating fatigue of unknown origin, the Centre of Disease Control (CDC) proposed a working case definition for Chronic Fatigue Syndrome (CFS), in 1988.
The CDC definition was revised in 1994 and we can expect further revisions as our knowledge evolves. CFS, incidentally, is the preferred descriptive term of because there is in fact no evidence of the "E" encephalomyelitis.
TAKE a closer look now at those who fulfil diagnostic criteria for CFS. They are not restricted to any social class or race. They are found in every country that looks for them. They are male and female. They are young and old. They are choleric, melancholic, sanguine and phlegmatic. Many (but not all) of them will become depressed. Surprised? You shouldn't be, up to 65 per cent of all patients with chronic illness will experience overt psychiatric symptoms at some point in time.
Research suggests that CFS patients become depressed after they become ill, not before. Research also suggests that CFS patients have unique abnormalities in their neuro-endocrine pathways. That is, they have disturbances in brain chemicals and hormones quite different from other known diseases. However, these have not yet been fully mapped. Consequently, and in spite of other interesting findings (such as the possible role of genetic factors), we still do not understand the illness. Nor do we yet have a diagnostic test or an effective treatment. Until we do, we shall have to live with the discomfort of uncertainty.