Chronic Fatigue Syndrome: Focus On The Provider of Care Rather Than The Consumer
Chronic Fatigue Syndrome: Focus On The Provider of Care Rather Than The Consumer
EDITORIAL
Anyone who knows anything about Chronic Fatigue Syndrome (CFS) will be aware of the
controversy that surrounds the condition. In social situations, once people are aware of my
area of interest, I am usually asked a number of questions. In this short article I will attempt
to address some of them. The most frequently asked question is whether CFS is indeed all
in the mind. This is a question which immediately leads me to want to go home. However,
I usually exercise some constraint and respond by saying that there is a fundamental
problem with the question. Most people, health professionals and lay people alike, have a
dualistic view of disease and illness (see Deary et al., 2005 [this issue]). Its either a
psychological problem or its a physical one. From the patients perspective a psychological
label implies that they are to blame in some way whereas a physical illness does not. Clearly
physiological responses are occurring whether you have diabetes, depression or anxiety.
However, it is probably a matter of emphasis and during initial consultations especially, the
wrong emphasis at the wrong time can have an adverse effect on the doctor patient
relationship.
From the patients perspective they are experiencing real physical symptoms and are keen
to understand both why the symptom has occurred and what they should do about it. Once
the doctor has carried out the necessary investigations and has reassured himself that clear
cut specic, organic treatable causes for fatigue such as anaemia are not the cause of the
symptoms, (s)he is often at a loss as to what to do next. So, at this stage, what is needed is an
appropriate label for the symptoms and a plausible explanation for them. If this is not given,
then dissatisfaction on the part of the patient can begin.
Much of this reported dissatisfaction is understandable. Dissatised patients with CFS are
more likely to describe delay, dispute or confusion over diagnosis. Many will have received
an unacceptable or inappropriate psychiatric diagnosis for their symptoms. They are more
likely to perceive doctors as dismissive, sceptical or lacking in knowledge about CFS and
report that the advice they received was inadequate or conicting. In contrast, satised
patients perceive their doctors as caring, supportive and interested in their illness. They also
have realistic expectations about their doctors and do not expect a cure (Deale & Wessely,
2000, 2001). There are of course a number of other reasons as to why patients might
Correspondence: Professor Trudie Chalder, Academic Department of Psychological Medicine, Guys, Kings and St Thomas
School of Medicine, Western Education Centre, Catcombe Road, London, SE5 9RJ. Email: [email protected]
ISSN 0963-8237 print/ISSN 1360-0567 online Shadowfax Publishing and Taylor & Francis Group Ltd
DOI: 10.1080/09638230500136522
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T. Chalder
perceive their relationship with their doctor negatively. In general practice, short rushed
consultations are the norm and it is probably difcult to adequately address patients
concerns in the time available.
Coming back to the mind/body problem then: How can this be overcome? If and when a
positive diagnosis of CFS has been given to the patient then, an explanation for why the
symptoms have not gone away needs to be offered. Like most illnesses it is sometimes
unclear as to why the symptoms started. It is possible that the patient will describe a number
of potential triggers but the key to preventing long-term disability, a hall mark of CFS, is to
address the factors that keep the fatigue going (perpetuating factors). One particular model
which addresses perpetuating factors, is integrative and appears to transcend the mind/body
problem, is a three systems model which links physiological, cognitive and behavioural
responses. This is useful theoretically and pragmatically as it assumes that all systems are
modulated by neural centres within the brain although the responses are partially
independent but interactive. In other words the three responses can augment, sustain and
weaken each other in lots of different ways. For example, in CFS, individuals beliefs about
their symptoms may inuence their behavioural coping (see Moss-Morris, 2005 [this
issue]). Coping (behavioural responses) also affects physiological responses. The latter is
seen clearly in individuals who stop engaging in activity or exercise and this can lead to
deconditioning (see Clark & White, 2005 [this issue]). The model has intuitive appeal in
that it integrates physiological processes without being so precise that specic hypotheses
cannot be tested. Patients respond well to it as they start to see how their own behaviour can
affect them physiologically. In the longer term they also observe that as a result of changing
their behaviour their symptom experience can change. The shortcoming of this model is that
it fails to take account of social inuences such as environmental rewards and/or
punishments which may also be important in determining coping behaviours, belief systems
and therefore outcomes such as symptom severity.
Once a shared understanding between doctor and patient has been achieved then what
next? Many patients with CFS seen in our clinic at Kings College Hospital report that they
were advised to rest. Many were given this advice by health professionals at the beginning of
their illness whilst experiencing a nasty virus. Most lay and professional people believe that
in the face of glandular fever, a particularly unpleasant virus, that it is advisable to rest.
However a systematic review showed that reduced physical functioning was the most
consistent risk factor for delayed recovery (Candy et al., 2002). The results of a randomized
controlled trial conrmed this nding in that individuals with glandular fever who were
given advice to engage in activity as soon as possible rather than rest excessively were less
fatigued at 6 months after onset (Candy et al., 2003). Interestingly those who believed they
would take more than a month to recover were indeed more fatigued at 3 months (Candy et
al., 2003). Clearly then, advice individuals are sometimes given by powerful health
professionals can cause iatrogenesis. By the time patients are seen in secondary care they are
often severely disabled. They are also confused about what course of action they should take
in order to get better. Nevertheless, once provided with a plausible model of understanding
their condition and some form of rehabilitation in the form of cognitive behaviour therapy or
graded exercise therapy many improve with up to 70% improving in terms of symptoms and
disability (see Bagnall et al., 2001 and Whiting et al., 2001 for systematic reviews).
In conclusion, both the patient and the health professional need to work collaboratively in
order to improve health. To date most of our attention has been on the patient. However, in
order to prevent iatrogenesis, the behaviour of doctors and other health professionals needs
to change. Given the ubiquitous nature of fatigue and the fact that over half of medical
consultations are related to so-called medically unexplained symptoms including fatigue,
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education of doctors should begin in medical school with a sizeable chunk of time being
allocated to the subject.
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