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Sick and tired patients in uproar - April 29 2002
Riddle of the quiet killer - May 4 2002
Brain link to fatigue syndrome - May 4 2002
Chronic fatigue 'not a disease' - May 5, 2002
An insidious condition begins to win attention - May
6, 2002
Living with pain of chronic fatigue - May 9, 2002
By Julie Robotham, Medical Writer
Sydney Morning Herald, April 29 2002
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 They have unanimously rejected the long-awaited document and demanded it be withdrawn.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".
http://www.smh.com.au/articles/2002/04/28/1019441325577.html
A similar, but shorter, article appeared in the Melbourne Age at
http://www.theage.com.au/articles/2002/04/28/1019441323251.html
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.
Her mother Christine nursed her daughter round the clock until she died in her arms, at home, six years ago at the age of 19.
With its mysteriousness and suggestion of psychological upset and malingering, she believes the CFS tag gave many doctors licence to ignore Alison's decline and trivialise her distress.
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 todefeat her.
James Isbister, the head of hematology 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.
http://www.smh.com.au/articles/2002/05/03/1019441432740.html
An area of the brain that controls the stomach receives substantially less blood in some people with chronic fatigue syndrome, a study shows. The finding adds more weight to the argument that the controversial illness is biological, not psychological.
Brain scans of 40 chronic fatigue patients were carried out by Adelaide scientists and compared against the scans of healthy people. The director of nuclear medicine at Queen Elizabeth Hospital, Dr Steven Unger, who headed the study along with neurologist Dr Rey Casse, said: "There was a very strong change in cerebral blood flow in patients."
The study showed a reduction in blood flow to the brain's insula cortex, which governs the smooth muscle in the gut. Unexplained stomach and bowel symptoms are common complaints for chronic fatigue patients.
The findings also showed a 20 per cent reduction in blood flow to the left lateral temporal lobe, which controls access to words, in younger chronic fatigue patients. Severe sufferers often experience difficulty expressing themselves.
In separate research, endocrinologist Dr Richard Burnett, of the Royal Adelaide Hospital, has shown that chronic fatigue patients who report gastric symptoms empty fluid from their guts at less than half the speed of people who are well.
"Talking to patients, about half of them have some kind of [gut symptoms], such as abdominal bloating after eating a small meal," he said. "A delay in liquids means a central problem. It comes from the brain."
http://www.smh.com.au/articles/2002/05/03/1019441434909.html
Australian Associated Press (AAP)
Published in the Courier Mail, Sunday Times of Australia, Herald Sun, The Australian,
The Mercury, The Australian, Daily Telegraph
May 5, 2002
by Judy Skatssoon
Australian doctors are being advised in a new set of national guidelines
that chronic fatigue syndrome (CFS) is not a disease.
However, the guidelines, published in tomorrow's Medical Journal of
Australia, acknowledge that people with CFS are genuinely ill and can
experience significant disabilities.
"CFS cannot be classified as a disease because the underlying ... mechanism
that causes the condition is not known nor understood," said infectious
diseases specialist associate Professor Andrew Lloyd of the University of
NSW, who was a member of the CFS Guidelines Working Group.
However, the guidelines recognise that, "people with CFS are clearly ill
and
are often significantly disabled".
The working group was established six years ago under the auspices of the
Royal Australasian College of Physicians to develop the guidelines.
According to the guidelines, if a person experiences disabling fatigue for
longer than six months, and has symptoms like headaches, joint pain,
impaired concentration and is not refreshed by sleeping, they should be
considered candidates for CFS.
The guidelines say doctors should display empathy with their patient's
suffering but describe as "unwarranted" fears that an occult infection,
pollution or electromagnetic fields may be causing irreversible neurological
or immunological damage.
They also advise doctors against creating a self-fulfilling prophecy by
jumping to diagnose a patient with CFS.
"When the prognostic features are favourable ... a more non-committal
diagnosis, such as "post-infectious fatigue state" may be more appropriate,"
the guidelines say.
The guidelines also make reference to CFS support groups, which have been
lobbying long and hard for better recognition of CFS. Such groups had gained
prominence and "filled an important gap" in the system, the guidelines
state.
However, "not all aspects of CFS support groups are necessarily positive".
ME/Chronic Fatigue Syndrome Association of Australia, Simon Molesworth
president said he was concerned the guidelines suggested CFS was largely in
the mind. "The overall impression is that it's an illness that's very much
exacerbated or somehow caused by perceptions, by a cognitive problem,"
he said
in a recent radio interview.
CFS usually affects young adults aged between 20 and 40 and is more common
in women. Contrary to the notion of CFS being a "yuppie flu", it is
not
particular to any socio-economic group and some studies suggest socially
disadvantaged groups may be more at risk.
The guidelines said based on there being an estimated 200 cases of CFS per
100,000 Australians, the illness cost the community a total of $525 million
a year. A single case cost $13,470 a year.
The guidelines noted that CFS had been linked to multiple chemical
sensitivity, Gulf War syndrome and "sick building syndrome," but it
was
beyond the scope of the study to consider them.
http://www.news.com.au/common/story_page/0,4057,4259802%255E1702,00.html
By Tom Noble, Health Editor
The Melbourne Age, May 6 2002
For Shelley Bartelt, the first signs were chest pains. Over the following
months the pain spread to her muscles. She felt fatigued, her eyes became
sensitive, her sense of smell heightened and her taste buds became
scrambled - tea tasted like garlic, milk was always off and tomatoes tasted
like metal.
A decade later Ms Bartelt still has chronic fatigue syndrome, and the
medical profession is still wrestling with what it actually is, what causes
it and how best to treat it.
Yesterday, after more than six years of study, the Royal Australasian
College of Physicians released guidelines on CFS and how doctors should
identify and treat sufferers.
"The guidelines provide an accurate summation of the best available evidence
or, where evidence is lacking, a reliable consensus of professional opinion
in this field," said the convenor of the group that drew up the guidelines,
Sydney immunologist Dr Rob Loblay.
Yet the guidelines, like the condition, are controversial. The ME/Chronic
Fatigue Syndrome Association of Australia president, Simon Molesworth, said
they should be changed because the underlying message was that people with
CFS had psychological rather than physical symptoms requiring treatment.
"Sufferers are doubted by their family and friends, doubted by their
school,
doubted by their employers, so you don't need the doctor, when they first
see them, to put them under a psychiatric analysis to see what comes out,"
he said. "Our concern is that the easy option, in busy practices, may be
to
take the anti-depressant approach."
In a 50-page analysis of the guidelines, the association says they downplay
or ignore biological aspects of CFS and "a psychiatric-psychological
approach to the illness pervades the document" and that potentially harmful
management approaches are suggested.
"The resultant document is biased and out of touch with the realities
of the
illness," the association analysis says.
The guidelines, released in the Australian Medical Association's Medical
Journal of Australia, said that CFS cannot be classified as a disease
because the mechanisms that cause the condition are not known or understood.
"However, we do know that people with CFS are genuinely ill and they can
experience significant disabilities related to their condition," said a
member of the guideline group, Associate Professor Andrew Lloyd. "Physicians
and others need to acknowledge that CFS is real."
Ms Bartelt, 32, had no doubt her condition was physical, not psychological,
yet she had been treated by doctors who thought it was all in her head.
She hopes to return to work in the next six months after a relapse at the
end of 2000. "It's such a heartbreaking thing to live with. All your hopes
and dreams go out of the window. And it's worse when people don't believe
you."
http://www.theage.com.au/articles/2002/05/05/1019441458617.html
Canberra Times, May 9, 2002
by
Danielle Cronin, Health Reporter
Canberra chronic fatigue syndrome sufferers are tired of attempts to "trivialise" their illness and are waging a public campaign to change perceptions.
ACT Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Society members, armed with blue ribbons, will visit local shopping centres in the lead-up to the International Chronic Fatigue Syndrome Awareness Day on May 12.
ACT ME/CFS president Frances Sandbach said the condition affected about 150,000 people throughout Australia, leaving, according to doctors, a $416 million annual medical bill.
"It's easier to ignore it than accept the concept of an illness so disabling yet so mysterious - until it strikes you that is," she said.
Ngunnawal resident Rebecca Daly, 24, believed she contracted the syndrome 12 years ago after a bout of glandular fever. "Every day is a struggle," she said. I am always exhausted and sometimes the pain is almost too much to bear but you learn to live with it and the most important thing you can learn is to enjoy what you can do rather than focusing on what you can't."
Ms Daly was virtually bed-ridden for three months after completing her Higher School Certificate and suffered a relapse when she graduated from university with a public-relations degree last year.
She should be ready to start her career but the condition had closed doors. "I'll never have the career I wanted... career-wise, it's personally and financially devastating," she said.
There is no cure for CFS but sufferers can opt for medication to manage symptoms including muscle and joint pain, dry eyes and mouth, profound exhaustion and problems with memory and concentration.
New national guidelines, in the recently published Medical Journal of Australia, recognised sufferers were "clearly ill and are often significantly disabled" but CFS was not a disease. Australian Medical Association president Dr Kerryn Phelps said yesterday the clinical guidelines for doctors recognised CFS was an illness but could not be classified as a disease because "we don't know the underlying cause or the disease process".
For more information about the ACT ME/CFS Society telephone 6290 1984.
(c) 2002 Canberra Times
http://canberra.yourguide.com.au/detail.asp?class=news&subclass=local&category=general%20news&story_id=147230&y=2002&m=5
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