AHMF: Medical Politics: Hickie in the Australian Doctor

Opening eyes to chronic fatigue
by Professor Ian Hickie
Australian Doctor, 11 August 2000

The patient, not the test, comes first in treating chronic fatigue, writes Professor Ian Hickie.

A physician colleague recently described how from the moment a new patient enters his consulting room he is thinking of what set of tests to order to confirm his clinical diagnosis.

His heart sinks if the patient presents non-specific problems that don't fit a clear pathophysiology.

As a psychiatrist, I rarely have the luxury of confirming my clinical diagnosis with laboratory tests, but I also have the pleasure of making syndrome diagnoses that are meaningful and translate into real patient outcomes.

The topic my colleague was discussing was patients who present with chronic fatigue. From his perspective, such encounters are rarely satisfying.

As much of my clinical practice is with these patients, I was struck by the differences in our approach.

He was not only afraid of being conned by the patient, but also of missing some rare but important (medical) diagnosis.

Following accepted wisdom, he saw chronic fatigue as largely a diagnosis of exclusion, a ragbag of non-specific mental disorders which required little further professional input.

Patients were sent back to their GP with the note that no pathology could be detected to explain the symptoms and that the patient should be reassured that no further investigation was required.

Clinically, I deal largely with syndromes that are based on personal reports of non-observable symptoms (major depression, panic disorder). These result in considerable disability if left untreated.

By contrast, when actively diagnosed and treated I expect good outcomes. When I meet patients with chronic fatigue I don't expect to order lots of tests and I make the diagnosis actively when the patient has the characteristic syndromal features (not only chronic fatigue but also non-restorative sleep, generalised musculoskeletal pain, cognitive symptoms and irritable mood).

It is not simply a diagnosis based on laboratory exclusion. I then present a model of brain-related abnormalities which give rise to such symptoms (after infection, in association with depression, or after other insults to circadian rhythm in genetically susceptible individuals).

We then negotiate and plan a treatment model to correct the sleep-wake cycle problem. If needed, I employ psychotropic agents to treat depression, anxiety, sleep or pain.

In most patients, the response is gratifying. Perhaps physicians, and more importantly, GPs, just don't have these sorts of experiences any more.

I presented this approach recently to psychiatrists largely working in the medicolegal field. They, like the physician, were afraid of being caught out by these patients.

"Are they really disabled?" was the common question. Although psychiatrists have argued cogently that patients with depression and severe anxiety disorders are among the most disabled people in the commnity, these doctors felt this somatic type of subjective experience might not be legitimate.

Clearly, this group of patients creates difficulties not only for the general physicians but also the wider medical community. While some of the reasons for this may lie with certain patient attitudes and behaviours (e.g., rejection of medical explanations, attraction to alternative practitioners, rejection of psychological explanations and interventions), the major problem is surely the way in which medicine is now practised (even by psychiatrists).

The independent test (including pseudo-tests like DSM-IV criteria for psychiatric disorder) rather than the patient's experience is the accepted benchmark for suffering. If a patient has a test result they can legitimately enter the system (medical, insurance, disability). If not, we reject them and then they are at war with us.

Primary care medicine is rich with patients with non-specific somatic syndromes (chronic fatigue, chronic pain, daily headache, fibromyalgia, irritable bowel) who are disabled and are largely dealt with by extensive medical investigation. Rarely do they receive adequate recognition or appropriate behavioural interventions.

Being told "there is nothing wrong with you" is not a helpful intervention—even if it is meant to say there is no other clear pathology to worry about.

The way we practise drives these patients into the hands of the alternative therapists and probably promotes both chronicity and alienation from conventional treatments.

It may be time to get back to accepting that patients and not lab tests suffer, and that successful interventions treat people rather than abnormal investigations.

The chronic fatigue world thrives on rejection. Doctors reject the nature of the patients' complaints. Patients reject the doctors' attempts at reassurance. Patients reject the tests they are offered as not approrpiate since they aim to exclude rather than recognise pathology. All parties reject the involvement of behavioural medicine.

Most importantly, those who work largely with syndrome sets (clinical psychiatrists and psychologists) are often most ill informed about the nature of these disorders.

It is timely for GPs to once again seize control over these issues and combine the principles of patient understanding, limited investigation, continuity of care and symptomatic interventions to assist these patients to the various levels of recovery they are able to achieve.

Professor Hickie is professor of community psychiatry at the University of NSW.