RADIO NATIONAL BROADCAST
Chronic Fatigue Syndrome: Clinical Practice Guidelines – 2002
Broadcast Monday 6 May 2002, with Norman Swan
The guidelines were produced by a working group convened
under the auspices of the Royal Australasian College of Physicians.
Norman Swan: Welcome to the program.
Today, remarkable new information on what hypnosis does to
How a leading cancer centre in the United States has opened
a complementary medicine clinic;
And guidelines released this morning in the Medical Journal of Australia advising the nation’s doctors how to approach, diagnose and treat people with Chronic Fatigue Syndrome, all based on the available scientific evidence.
One of the convenors of the expert and consumer group which
put the guidelines together is Dr Rob Loblay, an immunologist in the Department of Medicine at the University of Sydney. Rob Loblay reckons doctors need guidelines because there are so many misconceptions about Chronic Fatigue Syndrome.
Rob Loblay: For many years there’s been a belief that this is a psychological condition, that it doesn’t really exist, that the patients are imagining symptoms or malingering. So one of our important messages is that this is a real condition, it’s a genuine illness, we can’t yet call it a disease because we haven’t identified any underlying pathological changes in the tissues or the blood, but nevertheless it’s a problem that needs to be taken seriously.
Norman Swan: In these guidelines you do what people do in guidelines, is you rate the evidence according to how good the evidence is from the best being level 1, which is kind of randomised clinical trials down to level 4, which is clinical experience and people’s opinion. So at level 1 evidence, you know, the best possible evidence of this, what do we know about, for example let’s just start at the definition: defining the condition.
Rob Loblay: The definition in a sense is arbitrary. Fatigue is the cardinal symptom.
Norman Swan: But there’s even debate about what fatigue
means, whether it’s a kind of inattention, a vagueness, or a true tiredness.
Rob Loblay: Yes. The quality of the fatigue is an important aspect of diagnosing and defining the disease. It’s different from the fatigue that people get with chronic respiratory disease, chronic cardiac disease, psychiatric disease. It’s a different quality of fatigue. It’s still fairly non-specific, because there are people with a variety of other conditions that can experience very similar fatigue.
Norman Swan: So what kind of fatigue is it?
Rob Loblay: It’s a debilitating fatigue that people experience as completely enervating, unable to kind of sometimes lift a foot, or get out of bed, it’s a completely overwhelming sense of fatigue.
Norman Swan: And paradoxically, again according to your guidelines, you’d imagine somebody sleeps all the time with this, but in fact there’s quite gross sleep disturbance.
Rob Loblay: Exactly, yes, it’s very common for people with this condition to sleep badly, to toss and turn all night, and to wake up in the morning as though they haven’t had a single minute’s sleep, often feeling as though they’ve been run over by a bus.
Norman Swan: And how long has this fatigue got to last for you to trigger the diagnosis?
Rob Loblay: It’s six months. There is some debate about
whether it needs to be that long in all cases. Sometimes in adolescence and children, it’s worth considering the diagnosis after only three months, because early intervention seems to be able to prevent a lot of secondary problems with disability, social withdrawal, missing time at school and so forth. And having a diagnosis enables intervention to begin.
Norman Swan: It also enables a label, one perhaps getting into a vicious cycle believing that you’ve got this incurable disease. There is a risk in the label, isn’t there?
Rob Loblay: Indeed, yes, and part of the problem is that because the support groups attract the more severely disabled people, a perception can easily arise from publicity and information put out by support groups.
Norman Swan: That the outcome is universally bad.
Rob Loblay: That the outcome is terrible, that people are chronically housebound, unable to do anything, whereas in fact the spectrum is much broader than that, and in general the prognosis is not terrible; particularly in younger people, improvement is common and recovery is frequent.
Norman Swan: And you hear stories about swollen lymph
nodes, recurrent fever, that sort of thing; are they truly part of the condition too?
Rob Loblay: Not really. A lot of patients have the sensation of having recurrent fever, but if you measure their temperature, it’s usually normal, and the same with the lymph glands. These people say ‘My glands are swollen all the time, doctor’, and you then go and feel them. Often they’re not enlarged but they’re quite tender and they get the sensation of having swollen glands. If you actually measure a significant fever, if you find swollen glands or an enlarged liver or spleen, these are findings which point away from Chronic Fatigue Syndrome.
Norman Swan: It could be a viral condition.
Rob Loblay: Viral, or it could be something nastier, yes.
Norman Swan: And causes? When you search the literature,
what do we know about the cause?
Rob Loblay: There’s much speculation, but little knowledge.
Norman Swan: And so if you’ve had say, hepatitis or glandular fever and you’re feeling tired or fatigued afterwards, is that Chronic Fatigue Syndrome?
Rob Loblay: It can be, and glandular fever is a common trigger, but whether that’s the same thing as cause is semantic.
Norman Swan: So are there any tests that are worthwhile
Rob Loblay: No, there’s no reliable diagnostic test.
Norman Swan: But you do recommend tests in the guidelines.
Rob Loblay: There are tests which need to be done to exclude other causes of fatigue. And they’re generally very simple, basic tests, looking for anaemia, looking for evidence of liver or kidney disease. If there are clinical features in the history or the physical examination which raise a suspicion of things like viral disease, or auto immune disease, neurological disease, then additional tests may be warranted.
Norman Swan: What about doing viral antibodies to see if
you’ve had a virus in the past?
Rob Loblay: Generally this is not helpful.
Norman Swan: Well the $64 question: what can you do about
Rob Loblay: Well the first thing to say is that there’s no curative treatment. There’s no drug that will cure this problem or alleviate the fatigue.
Norman Swan: And if you don’t treat at all? How many people
get better by themselves?
Rob Loblay: It depends on the age groups we look at, it
depends on how acute the onset was, the more acute the onset and the younger the person, the greater the proportion of people that improve and recover.
Norman Swan: So what do we know about treatment then?
Rob Loblay: There are constructive things that can be offered, particularly in relation to physical and mental activity, in relation to sleep disturbances.
Norman Swan: To be specific?
Rob Loblay: With physical activity, the secret is to tailor the level of physical activity and mental activity for that matter, to that person’s capacities and needs. There’s no point pushing a person to exert themselves beyond what they’re capable of, because that simply makes the problem worse. But on the other hand, there’s no point just going to bed and doing nothing, hoping that it will all go away, because that leads to other problems.
Norman Swan: But haven’t graded exercise programs been
shown to work?
Rob Loblay: They’ve certainly been shown not to be harmful.
Norman Swan: Cognitive behavioural therapy where you
readjust people’s way of thinking about themselves and their environment?
Rob Loblay: Yes, well there’s a lot of misconceptions about what cognitive behavioural therapy actually is and seeks to do. What we are seeking to do is to teach people about their illness, in the same way that we do with patients with asthma: diet, exercise, sleep.
Norman Swan: You’re talking about level 1 evidence, that’s one of the few things that has got level 1 evidence, is cognitive behavioural therapy.
Rob Loblay: Yes, but it’s not uniformly positive evidence.
Norman Swan: And what about your area of interest which is
food allergy, food sensitivity, chemical sensitivity, to what extent has that a role?
Rob Loblay: Food intolerance can in some people produce
fatigue as a symptom in reaction to a particular food substance, an additive or some other substance. That’s not the same thing as Chronic Fatigue Syndrome. So we don’t consider this to be a cause of Chronic Fatigue Syndrome in any way. It probably is best considered as something one would think about excluding.
Norman Swan: So what’s your general practitioner or even a mother or father do?
Rob Loblay: Well first of all they shouldn’t be filled with pessimism, because many patients improve over time, given the right sort of support and care. The doctor should build up a very good relationship with the patient. It’s very counter-productive to be dismissive, doctors need to be careful not to use pejorative language, or stigmatising language, and to accept the patient’s symptoms as genuine. Patients simply want to be believed, and they’re making sure that all the support systems around them are in place, so they don’t become isolated and despondent.
Norman Swan: While these guidelines have been in
preparation, and also over this weekend you’ve been the
subject of a lot of flak because with Chronic Fatigue at least in the Associations, have been saying these are dreadful guidelines. What’s the essence of the criticism?
Rob Loblay: I think that there is a probably minority view that the guidelines are saying this is a psychological problem. This is in fact not the case, it’s the exact opposite. What we’ve tried to do is give doctors other ways of thinking about therapy that will mesh better. Using for example, an educational strategy in the way they do with diabetes or asthma, or a rehabilitation approach in the way they might do with cardiac disease or chronic lung disease. Norman Swan: Dr Rob Loblay is in the Department of Medicine at the University of Sydney.
Chronic Fatigue Syndrome Clinical Practice Guidelines –
2002, Medical Journal of Australia (Supplement) 6 May 2002.
Dr Rob Loblay, Immunologist,
Department of Medicine
University of Sydney
New South Wales 2006
Chronic Fatigue Syndrome Clinical Practice Guidelines – 2002 http://www.mja.com.au/public/guides/cfs/cfs2.html