Sydney Morning Herald, June 19 2003
Most sufferers of the so-called "yuppie flu" are no closer to finding relief. Peter Munro reports.
Peter Evans could walk for two minutes before his body collapsed. Back and forth to the mailbox might send him to bed, where he would sleep for 16 hours but wake exhausted and in pain.
The days he could work, as a Crown prosecutor for the Commonwealth Director of Public Prosecutions, he would fall asleep at lunch and wake when it was dark. Walking to and from the photocopier eight times in one morning wore him out. An 800-metre walk to a specialist doctor once put him in bed for three days. He couldn't concentrate, his memory was poor and his words came out wrong.
"It's not like you feel when you are really tired," he says over the phone from his Brisbane home. "It is literally like the life is drained from you and just everything in your body is aching."
Evans first fell ill on Anzac Day 1994, when he was 27. He was diagnosed with glandular fever and, later, with chronic fatigue syndrome (CFS). He welcomed the diagnosis, but not the news it preceded.
"In one way it is satisfying to know there's a name for this and it has been seen before," he says. "But it's also very frightening to suddenly learn that nobody knows how to treat it and nobody knows the prognosis for it."
That double-barrelled diagnosis is faced by every person with CFS. A label is put to their debilitating symptoms which, besides fatigue, can include muscle pain, poor sleep, gastric problems and post-exertional malaise but there is no sure way to relieve them.
Which is not to deny several significant scientific discoveries since the 1980s, when CFS or myalgic encephalomyelitis (ME), was commonly derided as "yuppie flu", based on the notion that it was a trendy, stress-induced disease of high achievers.
CFS is thought to be a disorder of the central nervous system with both physical and psychological symptoms that overlap several other illnesses, such as fibromyalgia, which is characterised by muscle pain and fatigue. It could affect as many as 100,000 Australians.
The Royal Australasian College of Physicians clinical practice guidelines, published in May 2002, say CFS predominantly affects adults aged between 20 and 40, and is more likely to appear in women. Despite its depiction as an upper-class sickness, some studies suggest that CFS may be more common in people at the lower end of the socio-economic ladder.
The most important matters about CFS how it is caused and how to treat it remain unknown. Theories abound on the cause including infection, genetic disorders or chemical poisoning. The scale of suffering ranges from those with mild symptoms to those housebound. People with CFS for more than five years tend to remain symptomatic.
Evans, 36, now retired from the public service, is chairman of the ME/CFS/Fibromyalgia Association of Queensland. He can stay upright all morning, but must sleep for two hours each afternoon. If he doesn't, his head and joints ache, his short-term memory falters and he starts mixing up words.
"I'm a hell of a lot better, but I am not well," he says. During nine years with CFS, including several relapses, Evans has tried many different treatments, both mainstream and unconventional, including a range of antibiotics to fight infection and a gluten-free diet.
Such a divergent path to partial recovery is typical of CFS sufferers. It also reflects the growing medical belief that it's not one, but several conditions needing a range of treatments.
Robert Loblay, an immunologist at the University of Sydney and the Royal Prince Alfred Hospital and convenor of the guidelines' working party, says it may be wrong to think of CFS as having a single or simple cause.
"We don't know what else to call it. But the consensus is that it probably won't turn out to have a single cause," he says.
Debate over the cause and treatment of CFS continues to divide some scientific researchers from GPs and patient groups. Central to the debate is the extent to which CFS is a psychological disorder.
In a collaborative study, running since 1997 and involving about 600 patients in Dubbo, that issue is being tested along with other possible causes of CFS in people who contracted the illness after a bout of glandular fever, Ross River virus or Q fever. The link between such infections and CFS has been the subject of many studies.
Previous studies carried out by the Q fever research group, based at the Institute of Medical and Veterinary Science in Adelaide, found that 8-15 per cent of people who contract Q fever a bacteria passed on by animals that can cause fever, headache, malaise and pneumonia experience prolonged, post-infection symptoms consistent with CFS. Additional preliminary findings, published this year in the journal Genes and Immunity, indicate that such patients have an abnormality in certain immune response genes.
Such findings support the theory that CFS may be caused by an immunological malfunction that is triggered by specific infections. Once the immune system is activated it causes the body to pour out streams of disease-fighting agents that help combat a virus, but unchecked in the absence of such an infection can, themselves, cause continuous illness.
The theory suggests that CFS sufferers are unable to turn down their immune response, causing prolonged symptoms similar to the acute infection. But the cause of such a possible genetic predisposition is unknown.
Low-dose clinical trials of synthetic forms of the immunosuppressant hormone cortisol have showed a reduction in CFS symptoms, but are not recommended by the guidelines because of the potential harm from long-term use of such drugs.
The Dubbo study, funded by both the National Health and Medical Research Council (NHMRC) and the US Centers for Disease Control, will examine the role of immunological factors, infection and psychological disorders in causing CFS.
However, it is the psychiatry-based branch of the study, led by psychiatrist Ian Hickie, director of the Brain and Mind Research Institute at the University of Sydney and chief executive of the national depression institute beyondblue , that has aroused deep distrust among patient groups and some GPs.
Professor Hickie blames that on the stigma surrounding mental illness. "Nobody wants to have a mental disorder because they fear they will be treated as if they don't have an illness," he says.
Studies show that most CFS patients develop psychological symptoms as part of their illness. This is unsurprising, with symptoms such as fatigue, sleep disturbance and cognitive impairment.
However, it is the primary causatory role that Professor Hickie gives to psychological disorders that alarms patients. He argues that neuro-psychiatric symptoms are present in CFS patients immediately after infection.
"It hinders the patient to rule out the role of psychological rehabilitation and social factors when they may be as important as other immunological or infective factors," he says.
Professor Hickie advocates cognitive behaviour therapy (CBT), a psychological technique which presupposes the existence of beliefs, attitudes and behaviours that may impair improvement in a patient's condition.
However, Simon Molesworth, national president of the ME/CFS Association, says recovery can be undermined by CBT. He says it's like telling a patient that you don't believe they are unwell.
CFS continues to be perceived as a psychological illness in the wider community, he says. "People's first thought is to mock the illness and think CFS sufferers are just lazy people," he says.
Molesworth, whose 10-year old son was diagnosed with CFS in 1995, also criticises the graded exercise component of CBT, which requires patients to gradually increase their exercise level.
This dispute seems to be less over the role of exercise in recovery than on the appropriate level to push the patient. Molesworth is concerned that some GPs, with no experience of CFS, will require patients to undergo vigorous exercise, worsening some of the symptoms.
Several other treatments that are not advocated by the guidelines are practised by some Australian GPs with large caseloads of CFS patients. They report varied success with a range of treatments, such as vitamin and mineral supplements, acupuncture, homeopathy and dietary restrictions. However, these treatments are outside evidence-based medicine.
A new patient database in Adelaide may play some role in overcoming the divide between researchers and patients.
It is being set up to integrate findings by different research groups and to start looking at the prognosis of people with CFS.
Dr Peter Del Fante, co-ordinator of the Adelaide ME/CFS Clinical and Research Network, says CFS research has been hindered by a lack of funding. He hopes the database will help fill in the gaps.
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