March 2002
"Whilst no one would question that physical exercise improves quality of life both in health and diseases in general, recommending graded exercise as a specific prescription for complex disorders like fibromyalgia and CFS is a gross oversimplication of science." - A Chaudhuri [1]
Contents:
Pacing and graded exercise compared
Quotes and comments:
on pacing || from the Guidelines || from an Australian
psychiatrist || on graded aerobic exercise
What the Canadian Guidelines say
The inclusion of pacing in the British "CMO's report" as a possible therapeutic strategy for CFS/ME has been welcomed as an important victory by some sections of the CFS community. British patient organisations such as Action for ME and the ME Association lobbied for its inclusion, saying their members' experience of pacing supports its effectiveness and suitability.
Pacing is an alternative to the "mainstream" management approach of graded exercise therapy. However, because there have been no controlled research studies on pacing, it can not be discussed as an option in "evidence-based" guidelines, like the Australian CFS Guidelines.
Graded exercise therapy (GE or GET) - sometimes referred to as "graded aerobic exercise" (GAE) - is often included as part of a cognitive behavioural therapy (CBT) program. It is recommended by those who follow the biopsychosocial model. The fundamental philosophy underlying this kind of treatment is that deconditioning, depression and believing one is ill are at the root of CFS. There is no medical reason why a person can't undertake more physical activity, and it will not do them any harm. Helping the patient to explore their negative unhelpful attitudes, getting them fitter through aerobic exercise, and gradually increasing their activity will prove this to them.
(Proponents of the biopsychosocial model deny that they believe CFS is 'all in the mind' and would disagree with the way I have put this. I invite you to read the extracts, below, from the Royal Australasian College of Physicians' CFS Clinical Guidelines and psychiatrist Dr Jeremy Couper's "How to Treat CFS in Adults" and make up your own mind.)
Pacing, by contrast, is based on accepting that there is something wrong, and that care is necessary to avoid relapse. To make the most of the energy available and be as well as possible, a patient needs to learn how to manage their illness and be careful about the amount and type of activity they do. Over time, the patient may actually find they can do more, as they are not constantly making themselves sicker by overdoing it and crashing. Pacing is all about "listening to your body" (instead of your conscience or other people), and accepting that this means your activity levels will vary a lot. This is the opposite of the "mind over matter" attitude behind GET.
Another difference is that GET involves having goals and targets and sticking to them as much as possible. Like an athlete in training, once you get used to a new level of activity, you then work on increasing it by doing a bit more than before. The amount of flexibility in the program will vary on the therapist, but on the whole the patient will be encouraged to stick to the plan. After all, not doing things because you don't feel up to it is considered to be one of the problems you're trying to overcome.
Critics of GET point out that CFS symptoms are notoriously variable, and say it is unrealistic to expect consistent levels of activity. They are concerned that pushing too hard at the wrong time can be harmful.
Research evidence on pacing, the CMO's report noted, is "sparse". There have been studies of GET, and it is on this basis that it is recommended by its supporters; but the CMO's report points out that the results aren't conclusive. While most of the people who finished the programs reported an improvement, there were high drop-out rates, leaving it open to us to wonder if those who dropped out did so because it made them sicker. In addition, there is no reliable evidence about the effectiveness of GET on more seriously ill patients.
Proponents of both types of therapy emphasise that it is helpful for a person to explore their beliefs about themselves and their attitude to life generally. With pacing this is going to involve deciding what's really important and focussing on doing that. It is also going to involve learning to accept yourself as you are, and filtering out some of the messages we are continually getting from society about what makes us a worthwhile person. - Moira Smith
Dr EM Goudsmit:
Pacing does not require you to make plans and stick to them. It only requires you to stay within your limits and stop when your body tells you it needs to rest . . . You don’t have targets or goals, other than to have some self-discipline and stop before you over-exert yourself. Making plans and attempting to stick to them belong with other strategies such as graded activity/exercise.
From Pacing for ME and CFS: the facts on the UK website Axford's Abode
Dr Anne MacIntyre:
" ... do 70% of what you feel able to do - not what you feel you ought to be able to do, or what you'd like to be able to do! Stop before you start to feel ill and save some energy for getting better."
From "Pacing - Watch your Overdraft!" which used to be on the Action for ME website. (Read this helpful article on Pacing instead)
Rehabilitation, behavioural and cognitive approaches link the principles of good clinical management with varying degrees of graded physical activity and psychological intervention . . . [text omitted]
The behavioural component encourages planned and supervised resumption of appropriate physical and mental tasks. A physical activity programme is individually designed to take account of the patient's current level of disability. After a prolonged period of illness and inactivity, new activities are introduced gradually and, most importantly, are scheduled to stop before they produce a significant exacerbation of symptoms. Over time the level of activity attempted is slowly increased at a rate determined by the patient's response.
The cognitive component aims to identify beliefs, attitudes and/or behaviours that may impair recovery. These 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/or social activities is necessary; a belief that occult chronic infection or chemical exposure has caused permanent injury. The existence of such beliefs is ascertained by exploring the person's causal attributions and his/her understanding of the illness.
Given that simplistic illness attributions are associated with poor outcome, people with CFS should be encouraged to adopt the widest possible view of the medical, physical, and psychosocial rehabilitative strategies the can be employed to promote recovery. The doctor and patient should work cooperatively to improve understanding, attitudes and behaviours that can help maximize long-term function. [text omitted]
On balance, current evidence suggests that rehabilitative, behavioural and cognitive approaches should be an integral component of management of people with CFS. This is in contrast to the widely held but inappropriate belief that prolonged rest and social withdrawal should be advocated. By the time patients present with established CFS, many will already have experimented with prolonged rest and will have found it unhelpful. In some, it may be associated with an exacerbation of sleep-wake difficulties and fatigue. Doctors should ensure that patients are informed of the dangers of prolonged rest and the psychological risks of social withdrawal.
From the Clinical Practice Guidelines on the evaluation of prolonged fatigue and the diagnosis and management of chronic fatigue syndrome Revised Draft (2001)
see Guidelines information on this site
From an evidence-based medicine perspective, the only treatment that can be recommended for CFS is cognitive behaviour therapy (CBT) of rehabilitative intent accompanied by graded increases in activity.
This approach to CFS has been based on earlier work in the chronic pain area.
In many respects CBT can be seen as advanced commonsense -- it is a way of breaking down the cycle of factors that may perpetuate the fatigue symptoms. It is also a technique that invites the doctor and patient to collaborate.
It enables the doctor and patient to look together at the patient's beliefs about their illness, how they became ill and why they remain ill, and to consider the patient's thoughts arising in response to their symptoms.
At the same time, CBT allows the doctor to explore the patient's emotional reactions to their symptoms and elicit feelings such as anger, frustration and sadness.
It also enables the doctor and patient to assess activity levels and the patterns of the patient's activities.
The doctor can introduce the patient to the concept of physical deconditioning and the accompanying physiological changes, and empower them with the idea they are able to modify their own physiology by altering their levels of activity.
The doctor can also examine interpersonal and social factors. In this mode of management it is possible to inquire about problems the patient may have been having at the time of onset of the illness, and what problems might arise were they to recover.
The patient's usual coping style when faced with stress and their general beliefs about their health and vulnerability to sickness should be explored. Information from the family may be valuable.
An individualised CBT program can be agreed, incorporating supervised graded increases in activity. As activity increases, the patient's negative appraisals of their situation and unhelpful beliefs about themselves or their health can be explored and challenged.
From "How to Treat chronic fatigue syndrome in adults" by Dr Jeremy Couper, Dept of Psychiatry, St Vincent's Hospital, University of Melbourne, in Australian Doctor, 3 August 2001
Trudie Chalder says that the key is to break down the link between feeling fatigued and stopping exercise. 'If your symptoms dictate what you do - ie, every time you're tired, you stop what you're doing - in the end you will be severely disabled . . . You need to gradually push through the tiredness, even though it's difficult,' she says.
A case of mind over matter? by Clare Rudebeck in The Independent (UK) March 6, 2002Sweeping statements like these are simply not accurate, and would be recognised as inappropriate if the actual study results were presented in the guidelines for readers to assess. . . published GAE/CBT studies have only involved ambulatory patients, not those bedridden or wheelchair bound. Similarly, only adults have been included in these studies, not adolescents or children. Thus at least two important groups exist for whom there is no published data about the efficacy of GAE/CBT. The guidelines must acknowledge this if doctors and patients are to make 'informed decisions' about treatment.
Response to the RACP Guidelines by Jim Oakley of the Victorian ME/CFS Society. . . the emphasis on mobilization as a primary rehabilitation strategy needs to be presented with caution. It may be harmful to patients (in our practice by far the majority) who are already functioning at beyond their capacity and whose symptoms are worsening as a result. Many of these patients need to manage their activity ie. match energy expenditure to energy supply and need to treat concomitant symptoms such as orthostatic tachycardia before mobilization is possible.
Response to the RACP Guidelines by Dr Eleanor Stein
See also Severely Affected and Graded Exercise from the 25% ME Group in the UK.
The authors of the excellent Canadian Clinical Case Definition (see my introductory article here) strongly criticise the idea that ME/CFS is due to wrong thinking and that exercise is the answer. They find that the studies quoted as "proving" this are not reliable, and conclude:
Physicians must take as much care in prescribing appropriate exercise as in prescribing medications to ME/CFS patients (100). Attending physicians should only approve of exercise programs in which the patient's autonomy is respected [and] appropriate pacing is encouraged ....
Comments on CBT and GET research from the Canadian Clinical Case Definition
1. "Missing data and compliance with oversimplification" - letter to the British Medical Journal by A Chaudhuri, Clinical Senior Lecturer in Neurology at the University of Glasgow, 1 August 2002, commenting on the study "..Prescribed exercise in people with fibromyalgia: parallel group randomised controlled trial...", Richards SC, Scott DL., published in BMJ 2002 Jul 27;325(7357)
Based on an item published in Chameleon, the journal of the ME/CFS Society of the Australian Capital Territory, Autumn 2002
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