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Pacing and Exercise in Chronic Fatigue Syndrome
Letters
613
Pacing and Exercise in Chronic Fatigue Syndrome Charles Shepherd (2001) makes the point that there are people for whom graded exercise as applied in published trials or audits is not effective. I would like to draw some additional and broader conclusions from my experience in this area. In the study by Bazelmans et al (2001) a relationship was found between low fitness and fatigue in both the CFS group and the controls. Their conclusions were that CFS patients were adjusting to a lower level of fitness by being less active, whereas the controls were not. They suggested that factors other than physical fitness were determining the low level of activity, fatigue and impairment in the CFS group and that cognitions could be responsible for this lower exercise tolerance. CFS patients were more likely to avoid physical activity in the presence of symptoms, contrary to the sedentary control group. This may explain why an approach to graded exercise that does not take patients' beliefs and responses to symptoms into account, may not have the intended impact. It will merely reinforce their beliefs that exercise makes them worse because they feel more fatigued.
Before benefits of increased fitness occur, graded exercise provides gradual exposure to often difficult and feared activities. Patients can then see how these will build into their personal, more meaningful goals that are achievable despite symptoms. There may be obstacles to patients feeling able to take part in activities/exercise. As may have been experienced by the patients who reported themselves to be worse after graded exercise, it can be administered in a rather strict way, or perceived as such by someone who has felt inveigled into exercise in the past. Patients may feel the increases to be more than they are confident to cope with. This conclusion may be arrived at as a result of increased feelings of fatigue or symptoms, or by the feelings associated with past worries about being fatigued, whether the patient is conscious of these links or not. This confirms a mistaken belief that all exercise makes them ‘worse’. ‘Graded exercise’ or functional activity is best started at a baseline set by the patients that is also manageable on days of increased symptoms. From there they build up systematically at a
predetermined rate that they feel is manageable. This is preferable to a symptom-contingent pattern (only doing activities when symptoms or worries are diminished, avoiding them when they are increased) that means the symptoms control their activity. The use of relaxation, both formally and incorporated into difficult activities, is also beneficial to help manage symptoms and for its energysaving function. Physiotherapists with skills in incorporating cognitive behavioural principles and an understanding of the condition are well equipped to help patients look at their underlying beliefs about symptoms, and help them understand the broader implications of their past experiences. For particularly disabled patients it may be that more extensive programmes, similar to those provided in cognitive-behavioural pain management, are the most effective way to improve their functioning. Tamara James MCSP CFS Service St Bartholomew’s Hospital London
ME – The Broader Perspective We agree with Dr Shepherd (2001) that non-specialist centres do not necessarily provide appropriate graded exercise programmes. People with CFS are a heterogeneous population and need individually tailored programmes. Over-ambitious exercise can certainly exacerbate fatigue. However, we wish to set his findings in a broader perspective. The questionnaire responses to which Dr Shepherd refers were limited to ME support group members, who are not representative of the whole population of CFS sufferers. For example it has been found that being a member of a patient support group is associated with a belief in physical causation and in rest as a coping strategy, and with greater disability (Sharpe et al, 1992). This makes it more likely that group members will
respond negatively to an exercise programme of any description. Secondly, we disagree with Dr Shepherd’s assertion that there is no evidence that deconditioning is a perpetuating factor in CFS. Prolonged inactivity is likely to produce profound physiological deconditioning and reduced exercise tolerance (Riley et al, 1990). The fact that exercise has been shown to be effective in treating CFS (eg Wearden et al, 1998; Fulcher and White, 1997) shows that deconditioning is a maintaining factor. Thirdly, what Dr Shepherd refers to as ‘graded exercise’ is not so. He refers to such programmes as inflexible, with consistent increases whether or not they can be sustained and regardless of how the patient is feeling. Some people with CFS may be subjected to this sort of programme but it should not be
confused with graded exercise, as described by Fulcher and White (1998). To summarise, a graded exercise programme should follow an assessment, be carefully negotiated, graded and monitored, and carried out by a qualified physiotherapist or exercise physiologist; progress should be determined by individual ability and based on the previous week’s performance. In our experience, patients often believe they have already tried graded exercise, but in fact were given an over-ambitious and unhelpful programme. Fourthly, with regard to pacing and exercise, it is not usually helpful to try and determine to what extent physical and/or psychological factors contribute to the condition. The mind and body are inextricably interlinked, Physiotherapy November 2001/vol 87/no 11
613
Pacing and Exercise in Chronic Fatigue Syndrome Charles Shepherd (2001) makes the point that there are people for whom graded exercise as applied in published trials or audits is not effective. I would like to draw some additional and broader conclusions from my experience in this area. In the study by Bazelmans et al (2001) a relationship was found between low fitness and fatigue in both the CFS group and the controls. Their conclusions were that CFS patients were adjusting to a lower level of fitness by being less active, whereas the controls were not. They suggested that factors other than physical fitness were determining the low level of activity, fatigue and impairment in the CFS group and that cognitions could be responsible for this lower exercise tolerance. CFS patients were more likely to avoid physical activity in the presence of symptoms, contrary to the sedentary control group. This may explain why an approach to graded exercise that does not take patients' beliefs and responses to symptoms into account, may not have the intended impact. It will merely reinforce their beliefs that exercise makes them worse because they feel more fatigued.
Before benefits of increased fitness occur, graded exercise provides gradual exposure to often difficult and feared activities. Patients can then see how these will build into their personal, more meaningful goals that are achievable despite symptoms. There may be obstacles to patients feeling able to take part in activities/exercise. As may have been experienced by the patients who reported themselves to be worse after graded exercise, it can be administered in a rather strict way, or perceived as such by someone who has felt inveigled into exercise in the past. Patients may feel the increases to be more than they are confident to cope with. This conclusion may be arrived at as a result of increased feelings of fatigue or symptoms, or by the feelings associated with past worries about being fatigued, whether the patient is conscious of these links or not. This confirms a mistaken belief that all exercise makes them ‘worse’. ‘Graded exercise’ or functional activity is best started at a baseline set by the patients that is also manageable on days of increased symptoms. From there they build up systematically at a
predetermined rate that they feel is manageable. This is preferable to a symptom-contingent pattern (only doing activities when symptoms or worries are diminished, avoiding them when they are increased) that means the symptoms control their activity. The use of relaxation, both formally and incorporated into difficult activities, is also beneficial to help manage symptoms and for its energysaving function. Physiotherapists with skills in incorporating cognitive behavioural principles and an understanding of the condition are well equipped to help patients look at their underlying beliefs about symptoms, and help them understand the broader implications of their past experiences. For particularly disabled patients it may be that more extensive programmes, similar to those provided in cognitive-behavioural pain management, are the most effective way to improve their functioning. Tamara James MCSP CFS Service St Bartholomew’s Hospital London
ME – The Broader Perspective We agree with Dr Shepherd (2001) that non-specialist centres do not necessarily provide appropriate graded exercise programmes. People with CFS are a heterogeneous population and need individually tailored programmes. Over-ambitious exercise can certainly exacerbate fatigue. However, we wish to set his findings in a broader perspective. The questionnaire responses to which Dr Shepherd refers were limited to ME support group members, who are not representative of the whole population of CFS sufferers. For example it has been found that being a member of a patient support group is associated with a belief in physical causation and in rest as a coping strategy, and with greater disability (Sharpe et al, 1992). This makes it more likely that group members will
respond negatively to an exercise programme of any description. Secondly, we disagree with Dr Shepherd’s assertion that there is no evidence that deconditioning is a perpetuating factor in CFS. Prolonged inactivity is likely to produce profound physiological deconditioning and reduced exercise tolerance (Riley et al, 1990). The fact that exercise has been shown to be effective in treating CFS (eg Wearden et al, 1998; Fulcher and White, 1997) shows that deconditioning is a maintaining factor. Thirdly, what Dr Shepherd refers to as ‘graded exercise’ is not so. He refers to such programmes as inflexible, with consistent increases whether or not they can be sustained and regardless of how the patient is feeling. Some people with CFS may be subjected to this sort of programme but it should not be
confused with graded exercise, as described by Fulcher and White (1998). To summarise, a graded exercise programme should follow an assessment, be carefully negotiated, graded and monitored, and carried out by a qualified physiotherapist or exercise physiologist; progress should be determined by individual ability and based on the previous week’s performance. In our experience, patients often believe they have already tried graded exercise, but in fact were given an over-ambitious and unhelpful programme. Fourthly, with regard to pacing and exercise, it is not usually helpful to try and determine to what extent physical and/or psychological factors contribute to the condition. The mind and body are inextricably interlinked, Physiotherapy November 2001/vol 87/no 11