Sick and Tired Patients in Uproar
Julie Robotham, Medical Writer
Sydney Morning Herald, 29.04.02
A row has erupted between doctors and patients over the diagnosis and treatment of the debilitating illness chronic fatigue syndrome (CFS).
The stand-off concerns new guidelines for doctors that patient groups say trivialise the condition, blame sufferers for their illness and promote harmful therapies. They have unanimously rejected the long-awaited document and demanded it be withdrawn.
They have warned that the Royal Australasian College of Physicians, which developed the guidelines, and the Medical Journal of Australia, which plans to publish them on Sunday, could be held legally liable if patients are made sicker as a result of doctors following them.
Simon Molesworth, the president of the ME/Chronic Fatigue Syndrome Association of Australia, said the recommendations presented the syndrome, which is estimated to affect up to 150,000 Australians, as primarily a psychological illness and characterised patients as malingerers. They under-emphasised emerging research pointing to biological causes, and included thera-pies that could be dangerous for people who were very sick.
So-called "graded exercise", in which patients are instructed to perform an increasing volume of activity over time, could have serious consequences for the seriously ill, said Mr Molesworth, whose organisation represents patient support groups in all states and territories, which together include 15,000 members.
As well, there was no evidence that a regime of strict control of sleep was effective, and there were insufficient scientific grounds to recommend anti-depressants, Mr Molesworth said. Both therapies are included in the document.
"There will be many instances of people who will not be appropriately treated because of these guidelines," Mr Molesworth said. Treatment of the syndrome was controversial but the guidelines were biased and drew only "from one side of the debate ... it's extraordinary that a blind eye can be turned to the other side of the research." One sufferer, "Alison" - who does not wish to be identified - had been sick for a decade and undergone a series of pathology tests that have been inconclusive.
Her symptoms have included constant vomiting, perpetual pain, and focal dystonia, a collapse of the muscle of one eyelid that gives it a permanent droop.
Five years ago her condition worsened. At one stage she had to be fed using a tube for 10 weeks.
It was then that the 24-year-old Sydney woman was asked what she said were intrusive questions about her private life.
"I was questioned inappropriately about family relationships," Alison said. Ordinarily she might have objected but, "it's so hard to stand up for your rights when you are debilitated".
Alison, who had to postpone plans to become a veterinary nurse, says she is feeling tentatively optimistic now. With a more sympathetic medical regime, which includes vitamin injections, she is no longer housebound.
What she wants from doctors is more open-mindedness and lateral thinking. "We need to be supported instead of feeling constantly under attack."
The chief author of the guidelines, Robert Loblay, an immunologist at the University of Sydney and Royal Prince Alfred Hospital, said the six-year preparation of the document had involved extensive consultation with patient groups, and many of their suggestions had been incorporated.
"We've made changes, including very recent changes, and we feel we've addressed the substantive issues," Dr Loblay said. Sections on the treatment of children and adolescents with the syndrome and for the most severely ill patients had been included after patient groups lobbied for them. "Our job has been to evaluate the evidence as best we can and tread a middle path," Dr Loblay said. "We're seeking to address the practitioners out in the community who see patients from time to time and don't know what to think, and to give them enough information to use in their day-to-day practice."
The president of the college, Richard Larkins, said it supported the guidelines, which were "helpful and balanced" but should be viewed as "a living document" because scientific knowledge about the syndrome was incomplete - particularly about its causes. "Should new evidence emerge they would be superseded," Dr Larkins said.
Mr Molesworth asked the editor of the Medical Journal of Australia, Dr Martin Van Der Weyden, to withdraw the guidelines from publication, but he declined. He wrote to Mr Molesworth that "to take on the role of a censor and ask a journal to desist from publication is unprecedented in scientific and clinical publishing in Australia".
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