When he was 10, Lachlan was a very sick boy. Or so it seemed to his parents. Their ordeal began with a phone call from the school. The boy was off color. Best come and get him. Lachlan, of Melbourne, got steadily worse as the months passed. Confined to bed, unable to bear strong light, he was vomiting and sweating profusely; his weight almost halved and he had to be fed through a tube. But doctors could find nothing wrong with him. One day, during the boy's fourth week in hospital, an eminent doctor leaned over him and declared, "By God, Lachlan, you're going to be one hell of an actor one day."
The anger that welled in Lachlan's father at that moment hasn't diminished. Indeed, it's just been recharged by the release in Australia of new clinical practice guidelines for chronic fatigue syndrome, the mysterious ailment with which Lachlan was eventually diagnosed. Patient groups had been eagerly awaiting the document, which they hoped would legitimize CFS in the minds of doctors and the community 14 years after the illness was named. But their hope has turned to frustration.
A close reading of the guidelines suggests patients aren't being over-sensitive. Though doctors are urged to acknowledge CFS patients' suffering, they're advised to "discourage excessive rest" to break the "vicious cycle" of inactivity, and urged to make a psychological evaluation of the patient and note any family history of "depressive disorder, self-destructive behavior or substance misuse," before reaching a diagnosis.
For Simon Molesworth, president of the ME/Chronic Fatigue Syndrome Association of Australia, the guidelines contain echoes of the skepticism and insensitivity directed at his son Lachlan seven years ago. They're a "backward step," he says, that traps sufferers in a "double horror." While enduring a debilitating condition, "they're faced with doubt among family, friends, employers, schools-wherever they go-as to whether they're just malingerers or neurotics."
Lachlan, who recovered slowly and resumed fulltime school this year, wasn't a typical CFS patient. More commonly, sufferers are women between the ages of 20 and 50 with less severe symptoms (see box). The diversity of symptoms has stumped doctors, who despite intensive research in many countries haven't nailed any biological cause for the illness, though the trigger often seems to be a viral infection or emotional trauma. There's no test nor cure for CFS, which is diagnosed only after an exhaustive process of elimination, and sufferers rarely look as terrible as they feel. CFS remains fertile ground for psychiatrists-to the dismay of patients, who are anxious for the discovery of a physical cause. Afflicted by something that disables their bodies, they resent the idea that the problem is in their minds.
The document was bound to disappoint them because it was co-authored by a leading villain in the eyes of CFS lobbyists-Ian Hickie, professor of community psychiatry at the University of New South Wales. Hickie is unusual in the medical profession, for he speaks with something like certainty about the origins of CFS. While doctors investigate the possible role of immune breakdown, hormone imbalances, allergy, poor nutrition and defective muscle tissue-and speculate about interaction between some or all of these-Hickie doesn't hesitate when asked what bodily system CFS should be sheeted home to. "The brain," he says. The symptoms of CFS "are all brain mediated, and we should see the bleeding obvious: CFS must involve brain dysfunction."
To illustrate, Hickie compares normal joint pain, which is accompanied by swelling, and CFS joint pain, which isn't. "But that's not to say that CFS sufferers aren't experiencing joint pain ... it's simply that that sensation may be arising in the central nervous system." CFS sufferers, he says, tend to "lose the plot" at the mention of a psychological disorder, but it's all a misunderstanding: "This notion that there are physical disorders which are real and lie in real body organs, and psychological disorders that are unreal and lie outside of body organs is a myth and very unhelpful," Hickie says. "It's a false dichotomy arising from the stigma that surrounds psychiatric illness."
Hickie believes CFS is partly a disturbance of the wake-sleep cycle. Many sufferers, he says, view their energy as like fuel in a car: push too hard for too long and you conk out. If this were true, he says, a long rest would make them feel better. But his experience is that it makes them worse. Better to regard the body as a rechargeable battery: patients shouldn't submit to tiredness but should gradually become more active during the day so they sleep better at night. He also argues that depression is often a precursor to CFS, or a consequence of it.
Hickie's views offend not only many patients but some psychiatrists. "There were months and months over a period of years when I could literally not get out of bed. Talking about a graded exercise program when you're that sick is just a joke," says Melbourne-based psychiatrist and former CFS sufferer Nicole Phillips, who developed the illness in 1989, at the age of 30, after a bout of viral pneumonia. GPs, she says, shouldn't automatically refer suspected sufferers to psychiatrists, many of whom regard CFS as a psychosomatic disorder. Phillips, who is medical advisor to the ME/CFS Association of Australia, took seven years to shake CFS-about the average duration of the illness. Her theory is that CFS involves not just the brain but also the immune system, which for some reason goes on permanent "heightened alert." For treatment, she recommends a "holistic" approach of sunshine, laughter, meditation, dietary supplements-and time.
Another former sufferer, Diana, 36, of Sydney, says she became exasperated with doctors who trivialized her symptoms. Relief came after consultations with a naturopath, who attributed Diana's condition to undetected food allergies and chemical poisoning, and prescribed a regime of vitamins, herbal tonics and food supplements. Guidelines co-author Hickie doesn't dispute that certain therapies may work for certain patients, but that doesn't justify their inclusion in the guidelines. "The best evidence at the moment is in favor of the behavioral approaches combined with ... anti-depressant drugs."
For lobbyist Molesworth, this amounts to a suggestion that CFS sufferers really just can't cope with the complexities of their lives and want out. "But I haven't met a single CFS patient-and I've met thousands-who doesn't desperately want to get well," he says. "I could line them up on the street and they will look drawn and weak and some will be leaning on sticks, but by God they want to retrieve their lives."
A Sydney GP whose mother has CFS recommends that the illness's name be changed to avoid the slightly feeble connotations of "fatigue." He suggests "Nightingale Syndrome"-in honor of the legendary British nurse who's thought to have been a sufferer. But only a breakthrough on cause, diagnosis or treatment is likely to change the perceptions of skeptical doctors. "Doctors like to fix people," says psychiatrist Phillips, "and with CFS they can't. Their subsequent feelings of frustration and impotence are often directed toward the patient." The bitter irony for CFS sufferers is that they must somehow muster the energy to continue the fight.
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