1. Chartered Health Psychologist
2. Editor of the ME and CFS References
We wish to thank all the patients, and Ms. Elaine Sturman MCSP for their helpful comments on earlier drafts.
This review introduces the concept of pacing, a strategy to help people with chronic fatigue syndrome (CFS) to manage their limited energy and avoid exertion-related relapses. Pacing recognises the plateau effect described in the literature, and provides an appropriate therapeutic option for the subgroup with abnormal metabolic and immunological responses to exercise. An evaluation of the evidence suggests that pacing is acceptable and helpful, but that it should be offered as part of an individualized, multi-dimensional programme and reviewed at regular intervals. Both the rationale behind pacing and the findings from controlled trials do not support the promotion by some patient groups of pacing as a “therapy” for CFS.
CFIDS chronic fatigue and immune dysfunction
Recent recommendations for the management of CFS have focused on two interventions, cognitive-behaviour therapy (CBT) and graded activity/exercise therapy (GET), (Chambers, Bagnall, Hempel, & Forbes, 2006; Reid, Chalder, Cleare, Hotopf, & Wessely, 2006). Both these approaches encourage gradual increases in activity according to a pre-determined plan, to reduce the physiological effects of deconditioning which are considered by some to play a major role in the perpetuation and exacerbation of fatigue (Burgess, 2006; Fulcher & White, 1997). However, surveys conducted by patients groups, as well as studies assessing the effect of graded exercise, have indicated that many patients cannot increase activity levels beyond a certain point, that the outcomes tend to be modest, and that such programmes may not be appropriate for patients with abnormal metabolic and immunological responses to exercise (Black & McCully, 2005; Lane, Barrett, Woodrow, Moss, Fletcher, & Archard, 1998; Wearden, Morriss, Mullis, Strickland, Pearson, Appleby, Campbell, & Morriss, 1998; White, Nye, Pinching, Yap, Power, Vleck, Bentley, Thomas, Buckland, & Parkin, 2004. The following article describes a strategy for those patients who are already operating at their maximum level of functioning, or where there is evidence of abnormalities which cannot be attributed to avoidance behaviour or the physiological effects of stress.
The concept known as pacing was originally developed for patients with myalgic encephalomyelitis (ME). The cardinal symptom of this disease is severe muscle fatigue following minimal exertion with a delay in the recovery of muscle power after exertion ends (Dowsett & Welsby, 1992; Ramsay, 1988, p.31). Since it was first described by Goudsmit in 1989, the strategy has also been adopted by people with CFS, a syndrome which shares many of the features of ME (Goudsmit, Stouten, & Howes, 2006). Initially, details were disseminated via factsheets and magazines published by support groups, but in recent years, information has also been available online (e.g., Goudsmit, 2004.
The feedback has been highly encouraging. For example, several surveys conducted during this time frame showed that patients regard pacing as more helpful than CBT, GET, medication for pain and sleep, and a number of other orthodox and complementary treatments (e.g. the CFIDS Association, 1999; Action for M.E., 2001). There is also growing evidence that it is increasingly accepted and recommended by medical professionals (Nijs, Meeus, & de Meirleir, 2006; Saidi & Haines, 2006; Van Houdenhove, 2006), whilst a randomized controlled trial indicated that pacing is useful in limiting deconditioning and reducing levels of fatigue (Wallman, Morton, Goodman, Grove, & Guilfoyle, 2004). Moreover, two programmes which included pacing as part of a multi-dimensional approach revealed marked reductions in fatigue and notable improvements in mood and overall health (Goudsmit & Ho-Yen 2007; Thomas, Sadlier, & Smith, 2006).
The basic principle behind pacing is that patients should remain as active as possible while avoiding over-exertion (Goudsmit, 2004). Although a gradual increase in activity levels is permitted, the rule is that they should stop when the initial mild fatigue turns into a more unpleasant sensation, or where arms or legs begin to feel weak. Most patients will experience these symptoms fairly quickly after commencing an activity, but it is not unusual for some reactions to be delayed. Depending on where they are and what kind of activity triggered the symptoms, the patient may choose to respond either by resting, or if the fatigue is localised, by switching to an activity which uses a different muscle group.
Mental activities such as reading, speaking on the telephone and using the computer are covered by the same rule, as is dealing with stress. In practice, pacing means that patients should plan their day to include plenty of time for rest and relaxation. There is no need to divide up minor tasks, but it is often helpful to restrict the number of demanding or stressful activities to one a day. The remainder of that day can then be spent doing less exhausting tasks, or resting, depending on how the patient feels. After a few weeks, most individuals will know from experience how they tend to respond to various activities and what they can manage per day without exacerbating their condition.
Some patients find it helpful to keep a diary, especially in the initial stages of the illness. This should include details of activities and symptoms, as well as sleep quality, new foods added to the diet and any event that was perceived as particularly difficult or stressful. We recommend that patients then rate the past 24 hours on a scale from 1, (ill, in bed all day) to 10 (well) as shown in appendix 1. As most relapses do not occur at random, a diary can help identify the various triggers, and monitor the effect of pacing and other coping strategies.
Once a person has a basic idea of what they are able to tolerate, they can make provisional plans for the days or weeks ahead, as long as they respond to any symptoms as they occur. As variables such as concurrent infections, the menstrual cycle, stress and even the weather can affect how a person feels on a given day, we do not encourage patients to stick to pre-determined schedules, or to set goals and targets. In our view, patients require a flexible approach which allows them to adjust their activities in order to avoid over-exertion, and to deal with the effects of other physical, emotional or environmental factors influencing their health. There are only two scenarios where we advocate that patients should pace themselves on the basis of time, rather than symptoms. The first situation where individuals should use external references is in avoiding visual disturbances. While muscle fatigue and malaise are noticed fairly quickly, it often takes longer to become aware of ‘tired eyes’. Accordingly, we recommend that a kitchen timer be used when reading or using a computer, and to rest for five minutes every quarter or half an hour, until it is clear how much the patient can tolerate. The second scenario where it is helpful to time oneself is during any task which requires a significant degree of concentration. This is because many patients find it difficult to gauge the effect of mental exertion and reactions to this are frequently delayed. Until patients have an idea how these kind of activities affect them, they should play it safe and take regular breaks.
While this version of pacing is arguably the least complicated and intrusive strategy available to patients who wish to manage their energy levels, it doesn’t suit everyone. One of the most common problems reported to us is the reluctance to stop an activity before it has been completed. This is perhaps the main reason why, at least in the initial phase of the illness, many continue to operate well beyond their limits. There are also individuals who push themselves because they do not understand the relationship between their symptoms and exertion, or because they wish to adopt a fighting attitude and perceive adaptation as a sign of weakness. Others have difficulties with the self-discipline required, and simply prefer a more structured programme, such as CBT and graded activity.
When the illness improves, patients will experience less weakness and fatigue, which should encourage them to gradually increase their activity levels. If operating within the new limits does not trigger an adverse reaction, we suggest that they switch to a GET-based programme, to help build up their fitness. However, since pacing does not prevent people from becoming aware of an increase in tolerance levels, there is no need to test one’s limits every few days and risk an unnecessary exacerbation in symptoms.
As a result of experience and the research on post-exertional fatigue (e.g., Paul, Wood, Behan, & Maclaren, 1999), we now also recommend an additional strategy which we have called ‘pacing and switching’. Pacing and switching means changing activities to avoid tiring specific muscle groups. For instance, if a person has been walking, the advice is to stop before, or at the first signs of fatigue and to switch to something involving different muscles, e.g. reading, watching TV, washing or ironing. Patients can continue this new activity for a while, then either rest, revert back to what they were doing before, or switch to something new. Using this approach, it may be possible to further reduce the duration and severity of post-exertional fatigue and hence extend the energy available for everyday tasks. Like the original version, pacing and switching is determined by how one feels, not by pre-determined plans and goals. It can be combined with the original version, or practiced on its own, depending on circumstances and personal preferences.
There are a number of different programmes which encourage graded increases in activity. The version recommended by the team at King’s College Hospital requires patients to alternate between activity and rest periods, and find a baseline where they feel they can keep up their agreed level even on a bad day. They are then advised to “introduce a slight increase in activity; keep it up till it gets easier, then move up again... Small, consistent steps are the key... You will improve by small degrees over a period of time, or you may have to decrease some of your activities, gradually introduce rest in some areas of our life” (Deary, 2006a). If patients experience more fatigue and muscle ache, they are assured that “this is the body’s normal response, it does not mean a relapse of your illness. Providing that everything has been done gradually, and you have not been over ambitious, this should not be too painful, and it should pass after a few weeks at most” (Deary, 2006b).
1. Theoretical differences
Graded exercise-based programmes assume that the fatigue reported by people with CFS is largely perpetuated by physical deconditioning, sleep disturbance and/or psychological distress (Clark & White, 2005; Fulcher & White 1997). Conversely, pacing makes no assumptions about aetiology but adopts a precautionary principle, in this case, that the symptoms may reflect ongoing disease. This view is supported by several studies which found no clear correlation between deconditioning and the symptoms of CFS (Bazelmans, Bleijenberg, van der Meer, & Folgering, 2001; De Becker, Roeykens, Reynders, McGregor, & De Meirleir, 2000, Sargent, Scroop, Nemeth, Burnet, & Buckley, 2002) and by the growing evidence of pathology in a subset (see below). In fact, where fitness levels do not appear to play a major role, the rationale behind GET seems counter-intuitive. If minor exertion triggers fatigue, why should gradually increasing the exertion have the reverse effect?
The emphasis on inactivity is also difficult to reconcile with some of the clinical features documented in the literature on fatigue syndromes. For instance, ME tends to affect the most often used muscles, so that in right-handed people, the muscles in the right hand and arm are generally weaker than those on the left (Ramsay, 1983). Similarly, studies on ME and CFS patients without a co-morbid psychiatric condition have identified specific deficits in cognitive function, which are difficult explain in terms of fatigue, malaise or an overall ‘mental dulling’ (DeLuca, Christodoulou, Diamond, Rosenstein, Kramer, & Natelson, 2004; Smith, 1991).
There is also a further difference between the strategies. Pacing aims to reduce symptoms both in the short and long term, while those promoting graded activity expect patients to tolerate weeks of illness and pain. There is no evidence at the moment that one approach is superior to the other, but the existence of two different ways of managing limited energy offers patients a choice and means they can experiment to find a strategy which suits their personality, circumstances as well as their symptoms.
2. Practical differences
As noted above, GET encourages patients to stick to the predetermined schedules even if they are feeling tired and unwell. Some therapists allow individuals to stay at the same level for a few days, some may suggest increasing the periods of rest (Deary, 2006a), but only in exceptional cases, such as during a concurrent illness, are people allowed to stop (Bleijenberg, Prins, & Bazelmans, 2003). This is based on the principle that patients need to build up their fitness and that there’s no gain without pain. In contrast, pacing requires patients to listen to their body and to stop when they begin to feel unwell. This is, in fact, the most important difference between the two approaches. While there are clear overlaps between pacing and activity programmes such as that promoted by Kings’ College Hospital – both advocate finding one’s limits and alternating activity and rest - the issue which separates them is not how much patients should do, but when they should stop.
3. Financial differences
Pacing is a strategy which requires no specialist training. A GP or practice nurse can explain the basic rules, and if required, assist patients who have problems in identifying their baseline. A review appointment may be useful to check that the condition has begun to stabilise, and that the patient is functioning at a level they can tolerate. For the more severely affected, pacing can be included in a multi-dimensional programme or other intervention which also provides medical care, emotional support, counselling, and dietary advice (e.g., Goudsmit & Ho-Yen, 2007; Taylor, 2004; Thomas et al., 2006).
Adaptive pacing therapy (APT)
This version is being promoted by the charity Action for M.E. and is a combination of pacing and graded activity. The version of pacing emphasises pre-emptive rest and the splitting up of activities. For example, their booklet on the subject (2004a) notes: “When you are doing a specific task, such as preparing a meal, it’s very tempting to try to complete it in one burst of activity. Instead, split the activity into a series of small stages, with periods of rest and relaxation in between” (p. 17). When establishing a baseline, patients are advised to be very cautious. “If you think that you can carry out an activity for 20 minutes, try reducing your activity time by five minutes to 15 minutes (75% of 20 minutes). The aim would then be to maintain 15-minute blocks of activity interspersed with rest/relaxation periods throughout the day. An even simpler way is to set your baseline at about 50% of what you think you can do on an average day. Split each activity up with 5 – 10 minute rest breaks” (p. 24).
Once the illness has stabilised, patients are encouraged to increase the number or duration of activities. However, instead of interpreting adverse reactions as a sign of over-exertion, Action for M.E. takes the same line as GET-based programmes. The booklet states: “you are likely to notice a temporary increase in stiffness or fatigue when increasing your activity levels. This is normal and your body will need a few days to adjust and adapt. However if your fatigue and other symptoms continue for a week or longer this might indicate that you have increased the activity too quickly”.
Theoretically, it is not clear on what evidence this protocol is based. One paper available online referred to the experience with chronic pain and the ‘envelope theory’ (Action for M.E., 2004b, p. 1, 2). In practice, the latter involves matching perceived energy with expended energy, although Jason and his colleagues do not require patients to operate below their capabilities, nor do they advocate that they tolerate an increase in symptoms for a week before adjusting their routine (Friedberg & Jason, 1998; Jason, Tryon, Taylor, King, Frankenberry, & Jordan, 1999). APT is currently being assessed as part of a Medical Research Council funded trial ( White, Sharpe, Chalder, DeCesare, Walwyn, R and the PACE trial group, 2007).
APT differs from the original in a number of ways. It is primarily based on time rather than the presence of symptoms, it requires more planning than the original strategy, the rest is pre-emptive rather than recuperative, and because the patients have to estimate what they can tolerate, many may spend a much longer period operating below their maximum level of functioning. In contrast, the original version encourages patients to live as normal a life as possible, but to let their body tell them when they need to rest. Symptoms such as weakness and malaise are not regarded as ‘normal’, and accordingly, it is recommended that individuals adapt their activities immediately, rather than wait for a week. However, it is consistent with the envelope theory and the version of pacing as described by Friedberg & Jason (1998).
Part of Action for M.E.’s programme resembles a strategy first put forward by Collinge (1994). He named it the “fifty-percent solution” because patients are advised to do only 50 per cent of what they think they are capable of (p. 81). They are then asked to monitor the impact of their activities for two days. If they relapse, they have to reduce their assessment; if they remain stable, they can repeat the process. According to Collinge, this strategy allows patients to spend half the available energy and invest the other half in their body’s healing process. So far, there has been no study of this approach to assess its efficacy.
Like Action for M.E., Campling & Sharpe (2000) recommend that patients use pacing to stabilise the illness but that they proceed to increase their activity levels, as in GET, in order to improve. An initial exacerbation of symptoms is considered “completely normal”, and they advocate that patients try to tolerate the symptoms for a week before amending their plans. While there is no published evidence that this combination is superior to either strategies alone, it is important that patients have different options, and since the version of graded activity advocated by Campling and Sharpe is comparatively flexible and realistic, it may be more acceptable to patients than other forms of GET.
The reports of fatigue following minimal exertion and the prolonged delay in the recovery of muscle strength are consistent with research by Paul et al. (1999). They found objective evidence of a loss of muscle strength lasting at least 24 hours, showing that this aspect of ME is not merely a result of a perceptual error or the misinterpretation of normal physiological phenomena. Further evidence of post-exertional fatigue was provided by Jason, Melrose, Lerman, Burroughs, Lewis, King, & Frankenberry (1999), who used time series regression to assess the relationships between perceived exertion, quality of sleep and symptoms. They found a close association between current energy expenditure and fatigue, but also a correlation between fatigue and the energy expended one hour, five hours and seven hours previously. To obtain more objective data, Sisto, Tapp, LaManca, Ling, Korn, Nelson, & Natelson (1998) assessed activity levels over a period of 14 days using waist-worn accelerometers. Following a treadmill test, they observed a 10% reduction in activity levels in the CFS group compared to the sedentary controls, and this was accompanied by an increase in the number of daily rests. They also identified a second reduction in activity levels a few days after the test, consistent with the subjective reports of delayed reactions to exertion, and again, this was accompanied by an increase in rest. Overall, the total daily activity levels remained relatively stable, suggesting that many of these patients were successfully pacing themselves, and there was no evidence of ‘boom and bust’ prior to the test. Their findings contrast with those of Lapp (1997) who reported that the majority of his patients felt worse after exercise, and that 22% of them were still in relapse when the study ended after 12 days. As he did not provide detailed data on activity levels, it is unclear if these individuals modified their behaviour after the test. It is also possible that Lapp’s patients were more severely affected or that they included a greater proportion of subjects with ongoing disease.
Research to explore the mechanisms underlying the phenomenon of post-exertional fatigue has identified abnormal responses to exertion affecting muscle function, the immune system, gene expression and brain perfusion. For example, Lane et al. (1998) reported that 37% of patients with broadly-defined CFS had abnormal lactate responses to exercise, and this was often associated with a relative deficiency in mitochondria rich type 1 muscle fibres. The tissue samples showed few effects of inactivity and only 10% of the 105 cases had muscle fibre atrophy. More recently, Sorensen, Streib, Strand, Make, Giclas, Fleshner, & Jones (2003) revealed an increase in the complement split product C4a, part of the immune response to foreign cells, six hours after exercise. No significant differences from baseline or between groups were observed for the cell-associated pro-inflammatory cytokines interleukin-1β, interleukin-6, tumour necrosis factor-α, and interferon-α or the anti-inflammatory cytokine interleukin-10. However, an interesting trend was observed: the CFS group means were elevated at 6 hours after exercise for each of the pro-inflammatory cytokines, whereas the control group means were decreased at the same time point. Similarly, White et al. (2004) found increases in concentrations of tumor necrosis factor-α in patients with CFS, and this was evident both three hours and three days after exercise. They also identified elevated concentrations of transforming growth factor-β after the journey from home to the hospital, and these remained high following exercise. The increased release of this anti-inflammatory cytokine during a relatively normal activity was unexpected but may be of clinical significance.
Further abnormalities have been reported by Whistler, Jones, Unger, & Vernon (2005) who found differences between CFS patients and controls in ion transport and ion channel activity at baseline, which were exaggerated after exercise, as evidenced by greater numbers of differentially expressed genes. Also intriguing is the abnormal reaction to exercise observed on SPECT (Goldstein, 1992). Scans from healthy individuals tend to exhibit increased brain perfusion after modest exercise. However, when studying a person with CFS, Goldstein documented significant decreases in perfusion in several areas of the brain and the defects found at rest had become “aggravated”. Twenty-four hours post-exercise, there was further evidence of hypoperfusion, consistent with anecdotal reports of delayed reactions to exercise and the phenomenon of post-exertional malaise.
One controlled trial supporting the use of pacing assessed a programme which also included medical care, emotional support and advice on sleeping and avoiding stress (Goudsmit, 1996). Over 80% of patients with post-infectious fatigue syndrome reported feeling better and there were significant differences between the treated patients and controls at six months for fatigue, somatic symptoms and self-efficacy. Moreover, 23% of the patients had improved to such a degree that they were discharged. The small size of the sample means that this study requires replication, but it should be noted that the improvements were comparable to those reported for CBT, and that these were achieved in a clinical setting, rather than a well-resourced research clinic.
Pacing has also been assessed in two randomized controlled trials (RCT). Like the study above, details can be found in the independent review by Chambers et al. (2006). The first assessed a multi-dimensional programme which included pacing and revealed improvements in both symptom severity and quality of life (Taylor, 2004). The second encouraged a gradual increase in activities but using the principle of pacing, i.e. the schedule was determined by the occurrence of symptoms (Wallman et al., 2004). If participants experienced a relapse or symptoms became worse, sessions were either shortened or cancelled and subsequent sessions were reduced to a length that the patient regarded as manageable. The 12-week programme improved resting systolic blood pressure, work capacity, depression and performance on a cognitive test. However, while 91% of the participants rated themselves as ‘better’ and no one felt that it had made them worse, the reduction in physical fatigue scores failed to reach significance and the increases in activity were similar to that recorded by the relaxation/flexibility group who acted as controls.
There is also evidence from surveys which supports the use of pacing. For example, of the 820 members of the CFIDS Association of America who responded to a questionnaire, 71% rated pacing as helpful and none reported adverse effects (CFIDS Association, 1999). Conversely, 34.5% rated GET as helpful but 28% noted adverse effects. In a British survey of 2338 patients, 89% rated pacing as helpful although 2% thought it had made them worse (Action for M.E., 2001). In contrast, 34% regarded GET as helpful while 50% believed that it had made them worse. None of the surveys gave a definition of pacing but all preceded the publicity about APT and ‘pacing and switching’ and it may therefore be assumed that the views relate to earlier versions, such as those described by Goudsmit (UK), and Collinge (USA). Finally, a 10-year follow-up report of people who developed post-viral fatigue following an outbreak in 1984 found that most were able to lead a near normal life by pacing themselves (Levine, Snow, Ranum, Paul, & Holmes, 1997). While we accept the limitations of uncontrolled studies and surveys, it is noteworthy that the findings from the various sources have been remarkably consistent. With evidence from four controlled trials and more than fifteen years of experience and feedback, we therefore believe that pacing is an acceptable and helpful strategy to manage limited energy levels and avoid exertion-related relapses.
It should be emphasised, however, that the original version of pacing was not conceived as a treatment or therapy for the condition as a whole, and we make no claims that it can also alleviate visual disturbances, thermoregulatory abnormalities, sore throats, nausea, balance problems and some of the other symptoms associated with ME and CFS. Although a few studies have assessed pacing alone and in combination with CBT, we consider that without ongoing medical care and emotional support, improvements are likely to be limited (Friedberg & Krupp, 1994; Wallman et al., 2004; Wright, Ashby, Beverley, Calvert, Jordan, Miles, Russell, & Williams, 2005). Moreover, given the lack of evidence that this strategy can alleviate a range of symptoms and promote healing, descriptions of pacing as a form of therapy may be construed as misleading. We therefore maintain our position that this strategy should be considered as an additional therapeutic option available to health professionals, and that for optimal results, it should be offered as part of a multi-disciplinary, multi-dimensional programme where interventions can be combined to meet individual needs and changing circumstances (Goudsmit & Ho-Yen, 2007; Thomas et al., 2006).
Methodological issues and clinical implications
Given the heterogeneity of the population, and the differences in circumstances, personality and phase of illness, it is difficult to determine which strategy is right for which patients. Various reviews have concluded that both GET and CBT/GET appear to reduce fatigue and improve physical functioning in a significant proportion of patients with CFS (Chambers et al., 2006; Reid et al., 2006). Indeed, some regard them as the most effective forms of treatment available, although the results have been far from consistent and many of the reported improvements have been modest.
One of the problems which makes it difficult to evaluate the various treatments is the limited number of outcome measures used in some of the trials. For example, most studies on CBT/GET and GET do not include an objective measure of activity and it is therefore unclear if any of the improvements can be attributed to the exercise regime. The importance of such information was demonstrated by Black, O’Connor, & McCully (2005), who studied six people with CFS and seven sedentary controls. Following a two week baseline period, CFS subjects were asked to increase their daily physical activity by 30% over baseline by walking a prescribed amount each day for a period of four weeks. Although the patients were able to increase their activity levels by an average of 28%, they reported an increase in fatigue, muscle pain and overall mood disturbance. A more detailed analysis of the data revealed that the increases in activity were restricted to the first 4-10 days of walking and that after this time, walking and total activity counts decreased (Black & McCully, 2005). In their view (Discussion ¶ 11), “the inability to sustain target activity levels, associated with pronounced worsening of symptomatology, suggests the subjects with CFS had reached their activity limit.” Although it can be argued that the targets were too ambitious and that the sample was too small to draw firm conclusions, it shows the value of including objective measures to assess both progress and effectiveness.
Another study which included an objective measure of activity also failed to show a significant increase following CBT/GET (Prins, Bleijenberg, Bazelmans, Elving, de Boo, Severens, van der Wilt, Spinhoven, & van der Meer, 2001 as discussed by Van Essen & De Winter, 2002, p. 57). Indeed, there is as yet no evidence that programmes such as those promoted by the teams at Kings’ College Hospital (Deary, 2006a) and Nijmegen (Bleijenberg et al., 2003) lead to significant and sustained increases in activity. In this context, it is worth noting a report by Friedberg (2002) who followed one patient’s progress for a period of 12 months. From baseline to treatment termination, the person’s self-reported increase in walk time from 0 to 155 minutes a week contrasted with a 10.6% decrease in mean weekly step counts. While the patient felt better, it appeared that the improvement may have been due to other factors, such the substitution of stressful activities for more mood-enhancing ones, and a reduction in job-related overtime.
The often cited study on GET by Fulcher & White (1997) revealed a significant reduction in mean levels of fatigue and an increase in physical functioning, but none of these measures had returned to normal and there were no improvements for anxiety, depression and quality of sleep. Moreover, there were no data showing that people had increased their activity levels after treatment. In another British study, Wearden et al. (1998) reported a 12% reduction in fatigue at 26 weeks and a 10% improvement in functional work capacity at 12 and 26 weeks in those who completed the programme. However, 37% of the patients dropped out, and again, there was no information on post-trial activity levels.
While GET is clearly helpful for a proportion of patients with CFS, there is as yet no evidence that it is equally beneficial in those patients with neurological and immunological abnormalities (Lloyd, Hickie, Brockman, Hickie, Wilson, Dwyer, & Wakefield, 1993). Moreover, studies of CBT/GET conducted in clinical settings have reported less impressive outcomes than the published randomised, controlled trials, highlighting the need to evaluate all interventions in routine practice, as well as research clinics (Akagi, Klimas, & Bass, 2001; Quarmby, Rimes, Deale, Wessely, & Chalder, 2007).
Since graded exercise assumes that there is no underlying disease process causing the fatigue, it may be argued that it is not an appropriate first line treatment for patients with documented abnormalities in the brain (Costa, Tannock, & Brostoff, 2005) and muscle (McGarry, Gow, & Behan, 1994), and those with raised levels of antibodies or evidence of immune activation (Innes, 1970; Landay, Jessop, Lennette, & Levy, 2001; Lane, Soteriou, Zhang, & Archard, 2003). However, if people are avoiding activity due to fear or misinformation, if their symptoms are not closely linked to exertion, or if they are well on the way to recovery, then a rehabilitation programme which includes GET is likely to be more beneficial than pacing and similar strategies.
It has been argued that close monitoring of bodily changes may intensify the perception and experience of symptoms (Dittner & Chalder, 2003). While this may be applicable in a number of cases, it should be noted that there is as yet no evidence that regular monitoring increases the severity of fatigue or that it affects the course of the illness. Moreover, it is important to differentiate between responding to symptoms as one becomes aware of them, an inherent part of pacing, and constant monitoring, which is unnecessary and should be discouraged.
A further issue concerns the influence of anxiety and depression, both of which may exacerbate CFS and undermine coping. Pacing is not appropriate for these conditions but that is no reason to reject it as a strategy to help manage the exertion-related symptoms associated with CFS and ME.
A third concern is that without gradual increases in activity, people will not improve (Straus, 2002; White, 2002). This view reflects a lack of knowledge about pacing. By avoiding the symptoms caused by over-exertion, people will feel less exhausted and have a greater sense of control compared to those who have not yet learnt to pace themselves, or who regularly exceed their limits. As well as reducing the number of relapses, it also prevents the ‘boom-bust’ cycles reported in the literature, and the symptoms caused by deconditioning. Given the limited evidence showing that GET leads to sustained increases in activity, and the paucity of information regarding its effects on symptoms other than fatigue and emotional distress, any claims that patients will not improve unless they increase their activity levels should be interpreted with caution.
Pacing is a management strategy to help patients with CFS limit the number and severity of relapses and avoid at least some of the complications of inactivity. It may be particularly useful for those who are already operating near or at their maximum level of functioning, and who cannot increase their activities beyond a certain point. It may also be appropriate for individuals with neurological and immunological abnormalities. Pacing therefore offers an alternative to GET and increases the number of therapeutic options for what is a complicated and often extremely disabling condition.
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|Monday||am. 20 min cycling hospital. Fatigue. Dizzy. 20 min standing in queue.
Weak legs. pm relax. TV, write letter, ok. Sleep, fair. Mood good.
|Tuesday||am. Rest, relax. Wash hair, ok. pm nausea 3.00pm. rest, potter.
Diet. Tried sweet and sour meal, lunch. Sleep, fair. Mood good.
|Wednesday||am. Cycle 10 minutes hairdresser. Dizzy after a few minutes.
pm. Relax. TV. Read. Ok. Sleep fair. Mood ok.
|Thursday||Am. Handwash, TV, relax. ok. Pm. vacuum two small rooms. Ok Relax.
Dinner, burger, chocolate, cake. Cramps. Disturbed night. Mood ok.
|Friday||Am. Nausea. Cramps. Rest in bed. pm. Potter. Fragile.
Better night. Mood ok.
This simple diary takes very little time to complete but provides a lot of useful information. While the patient is pacing her activities well and there is no sign of boom and bust, minor lifestyle changes may reduce or even avoid certain symptoms. For example, cycling and standing for 20 minutes is clearly beyond her limits and she needs to take care about her intake of sugar and fats. The dizziness at the hairdresser on Wednesday could be related to the position of the neck during washing (ask to bend forward), or reflect exposure to the airborne chemicals from the products used in the salon.
The use of a diary allows the patient and GP to identify the factors undermining the patient’s state of health, particularly in the early stage of the illness, and the flexibility of pacing means that the person can respond quickly to changing circumstances. This gives both a sense of control and limits the distress associated with exacerbations. Keeping a diary after the initial stage may help both the patient and doctor to see the stabilisation of the illness and hopefully, some improvement.
A shorter version of this review was published in Health Psychology Update, 2008, 17, 1, 46-52.