Sydney Morning Herald, Weekend Edition May 4-5
News Review 37 - Medical writer Julie Robotham
"Alison was like someone going through a concentration camp - suffering terrible physical distress compounded by insults and inhumanity."
Photo: Andrew Meares
People with chronic fatigue syndrome have been angered by new treatment guidelines that suggest their illness is mainly psychological, writes Julie Robotham.
Alison Hunter used to say she had lemonade in her legs and "shimlers" in her face. Still in primary school when she first became ill, those were the words she chose to describe the bizarre and frightening sensations that afflicted her.
Vocabulary was still an issue when Alison died. Despite a decade of crippling physical symptoms and abnormal pathology and neurology tests, medical science never came up with anything more tangible than chronic fatigue syndrome (CFS) to describe her illness.
Such attitudes are about to be institutionalised in Australian medical practice, says Simon Molesworth, the president of the ME/Chronic Fatigue Syndrome Association of Australia, courtesy of new treatment guidelines that will be sent to just about every doctor in the country, starting tomorrow.
Molesworth says the guidelines - intended primarily for GPs with no specialist knowledge of CFS - present an overtly psychological construction of the illness and skip too lightly over emerging evidence that metabolic disorders, infections and immunological problems can cause CFS.
According to Molesworth, the document fails to distinguish adequately between patients with less debilitating transient illnesses and those like Alison Hunter who are very severely ill and at risk of death.
Particularly contentious is the reference to cognitive behaviour therapy (CBT) - a psychological technique aimed at giving people additional insight into a negative behaviour so they can change it. The guidelines say examples in CFS include, "a fear that any increased physical activity will cause harm or prolong illness; a belief that all treatment is futile and that only complete rest will help; a belief that complete withdrawal from work, school and social activities is necessary."
Alison did not want to withdraw from school. "She was so desperate to participate," says Christine Hunter, who at her daughter's insistence bought her school uniform gym kit even though she could not use it. After a remission in the first bout of illness, at age 10, Alison went back to school swimming lessons but taking it easy was against her nature; she swam laps until she collapsed.
According to the guidelines, the use of psychological therapy in the treatment of CFS does not mean its cause is psychological: "Some patients find psychological terminology alienating, believing it to imply that their symptoms and disability are imaginary, contrived or 'psychosomatic'. Such beliefs are unfounded."
Alison learned, to the contrary, that some doctors were determined her illness must be psychological, despite any amount of evidence otherwise. She learned to wear her school uniform for doctor visits to short-circuit the suggestion that her "real" problem was her attitude to school. She was also suspected of having anorexia nervosa, despite repeated complaints from her parents over many months that her inability to digest food - the real cause of her weight loss - had never been investigated. Doctors later formally discounted the possibility of anorexia. Nurses walked past her bed, ignoring her in favour of those with readily defined diseases.
Six weeks before her death, a new specialist suspected Alison might have the complex immune syndrome Behcet's disease. With a legitimate label, the establishment became accepting of Alison, and even kind. "It was almost too cruel," says her mother, "to see her treated as she should have been all along." But Behcet's was never confirmed and by then Alison was so very ill. In the end, heart damage, massive ulceration to her throat, failure of her gut and bowel and horrendous neurological symptoms, conspired to defeat her.
James Isbister, the head of haematology at Royal North Shore Hospital, treated Alison when she was a child and again when her illness returned in her teens (though on other occasions she was under the care of a different Sydney hospital). And he had a personal connection; his own daughter was a schoolfriend of Alison, whom he describes as, "a brilliant girl, intellectually very vibrant".
"To be honest I felt helpless towards the end," Isbister says. "On many occasions I was extremely embarrassed about the way she was treated by the system. A lot of the terrible things Alison went through were doctors projecting their own fears and inadequacies. How anyone could not think she had a major medical illness was beyond me." Alison, he said, was, "like someone going through a concentration camp" - suffering terrible physical distress compounded by insults and inhumanity.
Isbister laments the edifice of medicine that cannot acknowledge things it does not understand. A teacher, he tries to impress on medical students the value of broad-mindedness, and the need to concentrate on people more than on symptoms. He tells them: "If you don't believe in a disease you'll never diagnose it."
While inclusion of the word fatigue may make CFS sound indistinct, the criteria for diagnosing it are actually very strict. At least six months of unexplained fatigue must be confirmed, but so must other signs including memory or concentration difficulty, sore throat and tender neck glands, muscle and joint pain, headaches, and long-lasting malaise after exercise.
It may range from relatively moderate to severe, and while severe forms may be rarer, they afflict significant numbers of Australians.
When he discusses his son with other people, Jim Chambers tells them: "If you're going to get sick in this society, for God's sake make sure it's a mainstream illness." Jeremy, 28, whose condition is still deteriorating, lives in a darkened room. Formerly an avid writer and reader and a postgraduate student, Jeremy can no longer look at a book because he cannot stand the glare of light on the page.
Chemical smells are agonising. "Can you tell me someone who can spot after-shave at 50 paces - and it can set him off and give him migraines - has a psychological illness?" demands his furious father. "These kids are being hung out to dry. It's a complex disease and the so-called experts are only looking at one set of information."
Jeremy's girlfriend, who is now recovering, has also suffered with CFS, which began after both came down with glandular fever five years ago. But those facts have sparked not a sniff of interest from local researchers, Jim Chambers said. The family is now seeking experimental therapies from overseas.
Jenny Hill, a Cowra woman, developed CFS as a teenager, but was not taken seriously until she lost control over her legs, her feet flopping loosely from her ankles. "I was just as sick for three years before I couldn't walk," she says. She realised she had been considered a psychological case when her Sydney doctor abruptly referred her elsewhere, saying, "It's a medical problem now."
Jenny, 22, is now improving, which she believes is thanks to regular sessions of plasma pheresis - a transfusion technique in which plasma is stripped from her own blood and replaced with donor plasma. But doctors have told her the resource should be reserved for sicker people.
"It shouldn't be this hard to get help for an illness," she says.
Chronic Fatigue Syndrome
© Sydney Morning Herald 2002 - Used with permission
Further reading: Address to International Meeting on Chronic Fatigue Syndrome
18-20 May 1994 Dublin, Ireland by Alison Hunter.
Alison Hunter Memorial Foundation
PO Box 6132 North Sydney 2059 Australia
Phone/Fax +61 2 9958 6285
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