Pacing

Pacing is a management strategy to help ME/CFS patients limit the number and severity of relapses while remaining as active as possible. First described by health psychologist Ellen Goudsmit in 1989, it gives patients the advice to:  “do as much as you can within your limits”. Pacing recognizes research showing abnormal metabolic and immunological responses to exercise in ME/CFS. It offers patients a middle ground between post-exertional malaise and the negative consequences of inactivity.

Pacing has proven to be an effective energy management strategy in multi-component treatment trials  and several large patient surveys reported that the majority of respondents find pacing to be helpful. Pacing is promoted by the CDC and 2007 NICE guidelines as an effective component in the treatment of patients with ME/CFS.

In ME/CFS
Pacing was developed as an energy management strategy for ME-patients in the UK in the 1980s. Health psychologist Ellen Goudsmit had suffered from post viral syndrome herself the decade before and noticed how patients had to learn through trial and error how to pace themselves. Patients were forced to discover through their own frustrating experience how to stay as active as possible within the limits the disease had imposed upon them. This is resulted in many unnecessary relapses. In order to prevent these, Goudsmit worked out her own approach into an advice that could be used by others. In the 1990s pacing was promoted in fact sheets by various ME- groups in the UK. Around the same time, Leonard Jason, a professor of psychology at the University of Chicago who also suffered from a post-viral fatigue syndrome, developed the envelope theory along the same principles of energy conservation.

In other conditions
The term pacing has a longer history in the management of other chronic conditions, though its meaning is ambiguous. Two main traditions exist. In the first, pacing is used in the context of energy conservation, a common element in the treatment of autoimmune and neurological disorders such as rheumatoid arthritis or MS. Energy conservation includes balancing activity and rest, setting priorities, delegating tasks and using assistive devices such a wheelchair. This form of energy management is similar to the principles of pacing used in ME/CFS.

Pacing is however more frequently used in the context of chronic pain where it has a background in operant conditioning. First described by Wilbert Fordyce in 1976, pacing referred to a time-contingent and gradual increase of activity levels. Fordyce’s main idea was that chronic pain patients shouldn’t be directed by their symptoms but by plans, goals and targets. Pacing then referred to the careful planned route, based on positive reinforcements instead of the fear of pain, to reach those goals. Often a task was broken up into manageable parts or quotas, so the patient can go forward step by step, using breaks in between. Although the principles of operant conditioning are no longer central, in the chronic pain literature pacing still frequently refers to a planned and gradual increase of activity levels. Pacing means doing things “slow but steady”, by splitting up activities in smaller parts, and without discontinuation if the patient is having a bad day. This form of pacing is quite dissimilar and sometimes even contrary to the form of pacing used in ME/CFS.

Stop before you overdo it
The aim of pacing in ME/CFS is to remain as active as possible while avoiding the relapses resulting from overexertion. This requires an understanding of the relationship between symptoms and exertion. Patients have to learn to recognize symptoms of post-exertional malaise and reduce their activities in time, in order to avoid relapses. This means activities have to be limited and structured per day such as washing one day and cooking the next. It also means an activities have to be stopped (sometimes abruptly) before it is completed, which can be frustrating and difficult to master.

No plans or targets but internal cues
In contrast to graded exercise therapy, pacing does not rely on plans, targets or goals, but on how patients feel. As one writer poetically described it:  “pacing is not a static decision but necessarily fluctuates with the monitoring of the physiological imperative.” Rest is advised at the first signs of muscle weakness. According to Goudsmit & Howes cognitive tasks form the major exception where a time-contingent approach might be more helpful. Because cognitive activities such as reading provide few internal cues to detect overexertion, it might be useful to use a timer to restrict energy expenditure.

Switching
A component that has been added to pacing is called switching. This refers to changing activities in order to avoid tiring specific muscles. As Goudsmit explains: "“For instance, if you've been reading for a while, stop before your eye muscles get tired and do something which involves a different muscle group, e.g. walking, washing clothes, eating, talking. Do that for a while (stop before you reach your limit), and then switch again (you can even go back to reading).”"Rest periods can be inserted between each change of activity.

Diary or activity tracker
Another advice that is often part of pacing is to keep a diary where information about activity levels, stressful events and symptom flare-ups can be recorded. This might help patients to understand the relation between overexertion and symptoms. Abbreviations and scoring systems can be used to limit the energy needed to fill in the diary. Other patients find it helpful to use an activity tracker, to obtain more reliable information on the amount of energy they’ve spent each day.

Increase activity when you are ready
Pacing is about figuring out how much one can do without triggering a relapse. If patients feel their health has stabilized or improved and they no longer experience setbacks, it might be helpful to gradually increase activities to see how it goes. In a consensus document about pacing, Goudsmit & Jason wrote: "“If increases in activity do not result in symptom flare-ups for three months and patients feel that they are close to about 60 to 70% of their former functioning, they may wish to change to a gentle form of graded exercise therapy (GET), starting at a low level and increasing incrementally in duration and intensity to further increase their fitness and tolerance thresholds.”"One of the other authors of this consensus document, Karen Wallman, tested a symptom-contingent form of graded exercise in a randomized controlled trial in 2004. Patients were allowed to stop or do less if their symptoms became worse while increases in exercise were only advised if patients felt they were coping with current activity level. After 12 weeks of graded exercise with pacing, patients showed improvement on objective outcome measures such as blood lactate production and performance on a Stroop Colour word test.

Not a Therapy
Pacing is often a helpful coping strategy for patients with ME/CFS, but it is not a therapy. It does not claim to alleviate the many symptoms of ME/CFS such as sore throat or light sensitivity. Pacing is not so much a treatment as a way of energy management for patients with ME/CFS. It is usually one component of a multidisciplinary programme for ME/CFS patients that may also include information about the disease, emotional support or advice on nutrition. Because pacing does not require specialist training, its basic principles can be counseled by a GP or nurse.

In ME/CFS
Pacing has been used in several multi-component treatment trials. In 1996 Goudsmit conducted a controlled trial for patients with post-infectious fatigue syndrome. Pacing was one component of a multidisciplinary treatment protocol prescribed by Darrel O. Ho-Yen, which also included medical care, emotional support and advice on avoiding stress. More than 80% of patients reported feeling better. At 6 months there was a significant difference between controls on outcome measures such as fatigue or self-efficacy. 23% of the patients had improved to such a degree that they were discharged.

In 2004 René Taylor offered a similar multidisciplinary program to 47 ME/CFS-patients in a randomized clinical trial. This study was part of the Chronic Fatigue Syndrome Empowerment project, a federally funded research project designed to develop and evaluate the effects of a consumer-driven rehabilitation program for individuals with chronic fatigue syndrome. Participants received four months of illness management groups followed by seven month one-on-one self-advocacy training. Besides pacing the program focused on economic self-sufficiency, coping skills and nutritional advice. Results indicated that overall quality of life had significant improved in the treatment group – a remarkable finding, since trials on cognitive behavioral therapy or graded exercise therapy, often fail to improve quality of life in ME/CFS patients.

Further evidence supporting pacing, comes from research on the envelope theory, an energy management strategy developed by Leonard Jason which is based on similar principles. Patients are advised to stay within envelope; meaning the limits the disease has imposed upon them. Patients who over-exert themselves are advised to cut back while those who have been inactive for a long time are encouraged to gradually increase their activity. An analysis of the activity pattern of 144 ME/CFS patients showed that those who extend their activities beyond their energy envelope, experience more disability. These results were confirmed in a larger 2017 study involving 429 patients from different locations. Furthermore a prospective study of 44 patients that were part of a study on nonpharmacological interventions in ME/CFS, showed that “those who were within their energy envelope before treatment showed more improvement in physical functioning and fatigue compared to those outside of their energy envelope."

In several large patient surveys, respondents indicated they’ve found pacing to be helpful in managing ME/CFS. A 1999 survey (n = 820) by the CFIDS Association of America (now Solve ME/CFS initiative) showed that 71% of patients rated pacing as helpful. In a survey conducted by Action for ME (n = 2338) in 2001 89% of respondents found pacing to be helpful. These results were confirmed in a follow-up study by Action for ME in 2008.

Another large survey set up by the ME association (n =1428) showed patients preferred pacing over CBT or GET and judged this approach to be more appropriate to their needs. The survey concluded: "“Pacing was consistently shown to be the most effective, safe, acceptable and preferred form of activity management for people with ME/CFS and should therefore be a key component of any illness management programme […]The benefit of Pacing may relate to helping people cope and adapt to their illness rather than contributing to a significant improvement in functional status.”"

In the treatment of chronic pain
While pacing is a highly endorsed clinical strategy in the treatment of chronic pain, empirical evidence to support its effectiveness is currently lacking. Raichel et al. for example found that pacing was correlated with higher levels of pain interference in 157 patients with spinal cord injury. In a study by Ersek et al. pacing was positively associated with physical disability and pain intensity in the elderly. Kindermans et al. reported a correlation between pacing and higher levels of disability and symptoms of depression. According to the authors, “this seems to suggest that pacing, as it is currently measured, might reflect a (hidden) form of avoidance behavior.”  Using accelerometers to track activity levels, Cuperus et al. were able to demonstrate in a more objective manner that pacing was associated with lower activity. This led the authors to conclude that “activity pacing might not only be ineffective, it might even be potentially harmful, as inactivity-related comorbidities increase the risk for mortality and negatively influence quality of life.” In a 2012 review Andrews et al. concluded that “pacing was generally linked to better psychological functioning but more pain and disability.”

Since then, several explanations have been put forward to explain these bleak results. Susan Murphy argued that there might be a difference between how patients and clinicians view pacing. According to Murphy patients intrinsic view on pacing is mostly symptom-contingent and directed at reducing pain, while those of clinicians is time-contingent and aimed at increasing activity levels. An appropriate assessment of pacing should thus occur after instructions by a clinician, to account for these differences. Murphy also suggested pacing should be trailered to the individual patient by using physiology measures obtained during an exercise test, as targets. Her ideas were tested in a large trial of 193 patients with osteoarthritis, but once again results were disappointing. Both the general and tailored pacing group, were worse off than the patient group receiving usual care.

Because some studies did find positive results for pacing in the treatment of chronic pain conditions, Deborah Antcliff argued that the term pacing, denotes several different aspects. In the Activity Pacing Questionnaire (APQ) she helped develop, 5 factors were differentiated: activity adjustment, activity consistency, activity progression, activity planning, and activity acceptance. Research by Antcliff suggested that adjustment, acceptance and progression were associated with worsened symptoms, while consistency was correlated with improved symptoms. This has pushed Antcliff to promote the use of a time-contingent graded increase in activity levels, as an essential element in the definition of pacing.

Energy envelope theory
Leonard Jasons energy envelope theory is very similar to pacing. Patients are advised to stay within envelope; meaning the limits the disease has imposed upon them. According to Jason:  “the phrase, 'staying within the envelope,' is used to designate a comfortable range of energy expenditure, in which an individual avoids both over-exertion and under-exertion, maintaining an optimal level of activity over time.”  Research has shown that ME/CFS patients who go beyond their envelope and spent more energy than they estimate to have, experience more symptoms over time.

Adaptive pacing therapy (APT)
A modified form of pacing is called adapative pacing therapy (APT). This version was promoted by Action for ME and used in the PACE-trial as an alternative to CBT, GET and specialist medical care. There are some major differences between APT and the original form of pacing advocated by Goudsmit. The former for example stresses splitting up activities, while this is not necessarily an advice used in the latter. APT seems more influenced by chronic pain literature as it gives more weight to planning and building up activities. A booklet on pacing, produced by Action for ME explains to patients: “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.” No such advice is given in the pacing, developed by Goudsmit or Jason and may not be adequate in the treatment of patients with ME/CFS. One of the (anonymous) participants in the 2015 ME association survey,  for example, complained that pacing put too much emphasis on increasing activity while instead someone should have told them to rest when experiencing symptoms. "'It taught me to listen to my body and not ignore symptoms and I gradually began to see the link between exercise/activity and delayed fatigue, which I hadn't done beforehand. That was crucial in slowing down my deterioration. But I wish someone had said 'if you are experiencing symptoms you should rest' – the message was, 'you can get worse briefly but symptoms should then go again'. I kept waiting for them to go and they never did. Then I had a massive relapse which I have not recovered from. Pacing is not very satisfactory – it is full of confusing contradictory messages […]  I felt the emphasis was too heavily on increasing activity – I should have been told to rest.”"These criticisms only apply to APT, and not to pacing.

Another major difference is that APT promotes the use of pre-emptive rest. In the PACE-trial for example patients were advised to follow the 70%-rule, meaning they shouldn’t go beyond 70% of their perceived energy limit. This is also not an element in the writings of Goudsmit or Jason, where patients are advised to correctly balance perceived energy and energy expenditure. Telling ME/CFS patients to do even less than their perceived energy limit might have negative consequences, as was noticed by Leonard Jason: “By doing less than what patients have the energy to do, and the resulting pre-emptive rest, this intervention could even have the unwitting effects of increasing social isolation.” This was in fact what Goudsmit found in the clinical trial in which the protocol of Ho Yen was tested. The treatment arm also included pre-emptive rest and some patients said they felt isolated as a result of the prescribed reduction in activity.

Finally APT proposes pacing as a therapy, while Goudsmit always emphasized this is not the case. She explicitly warned that: “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. […] 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.”

The findings of the PACE-trial, analyzed according to the original protocol, did not find a significant difference between APT, specialist medical care, graded exercise therapy or cognitive behavioral therapy. Jason remarked that the label APT, included much more than pacing: “It is important to note that APT (Cox et al., 2004) also included advice on stress management, sleep, and so on, and this makes it difficult to determine what was effective or ineffective if one cannot separate the effects […] the authors evaluated APT, not solely pacing.”  According to Goudsmit and Howes, “the differences between APT and pacing almost certainly explain the discrepancy between the results relating to the former, and the research as well as positive experiences of pacing reported by patients in surveys conducted by support groups.”

Activity pacing-self management
Another form of pacing, Activity Pacing Self-Management  (APSM) is promoted by the Belgian research group of Jo Nijs, one of the authors of the 2012 consensus document on pacing. His version of pacing is more in line with the tradition of operant conditioning in the chronic pain literature, and less with the principles of energy conservation. According to Nijs the PACE-authors made a mistake by placing pacing and GET in opposition to each other, as it is more effective to use both strategies in the treatment of ME/CFS. In APSM patients first learn to pace themselves to find a baseline of activity that doesn’t result in relapses. Only if they’ve managed to stabilize their condition - and this might take several weeks – can they proceed to the next phase which aims to gradually increase activities according to time-contingent scheme. In APSM pacing is thus used a stepping stone to graded exercise therapy.

Nijs' research group tested the APSM approach in a 2015 randomized control trial (the control group received relaxation therapy). The results were favorable, though no objective performance measures were used. The study was also rather small as only 16 ME/CFS patients were involved in the experimental APSM group, of which 4 (25%) stopped the treatment prematurely.

Focus on symptoms?
Some have argued that close monitoring of symptoms might aggravate distress and disability. According to Goudsmit & Howes, however “ 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.”

Trapped in the envelope?
Others have argued that pacing might hamper recovery as it lets symptoms of pain and fatigue determine the amount of activity patients do. According to Peter White: the theoretical risk of pacing is that the patient remains trapped by their symptoms in the envelope of ill health". Yet pacing does not limit the activity of patients, as long as they feel they are up to it. Goudsmit wrote: “my concept of pacing means responding to your symptoms so if you feel OK, there's no reason to stop. If you want to increase your activity levels, you are free to do so as long as you don't over-exert yourself in the process.”

Reliance on subjective symptoms instead of objective limits
Researchers from the Workwell foundation have argued that pacing puts too much emphasis on the subjective experience of symptoms and that objective limits to avoid relapse are preferable. In 2010 Davenport et al. wrote: "“To date, recommendations for pacing self-management in people with CFS/ME have been made on the basis of symptom acuity and irritability. Although these criteria seem to be intuitive, they may fail to account for the rapid changes in function that are characteristic of CFS/ ME. An impaired perception of effort in people with CFS/ME may interfere with the optimal maintenance of symptom-free activity levels if pacing self-management criteria that are based solely on symptomatology are used.”"As an alternative the authors propose to use a cardiopulmonary exercise test (CPET) to gather information about the patient’s physiology. The anaerobic threshold (AT)  in particular can be seen as the boundary where exercise becomes harmful for ME/CFS patients. Davenport et al. suggest that a 10% margin below the estimated heart rate at the AT should be used as an exercise limit. Patients can set a heart rate monitor to make an alarm noise, each time the heart rate exceeds this limit. This provides more reliable feedback to avoid relapses, then the mere perception of muscle weakness originally used in pacing.

Too much activity?
Instead of advising too little activity, some have argued that pacing actually instructs patients to do too much. ME-advocate Gabby Klein, for example wrote:  “My treating physician -  Dr. Enlander - always told me to do 50% of what I think I can do. It was the best advice I got. There is much more potential harm from activity/exercise than from rest.” ME-blogger Sally Burch argued that ME/CFS patients will usually do too much activity, so that the best advice a physician can give, is pre-emptive rest. According to Goudsmit and Jason however, advising patients to do less than they could without exacerbating symptoms, might impede them from engaging in meaningful activities such as contact with friends and family. As such, pre-emptive rest might increase distress and disability.

Factsheets and information

 * Pacing for ME and CFS: a guide for patients by Dr Ellen Goudsmit. Welsh Association of ME & CFS support (WAMES), May 2005.
 * Pacing for ME/CFS: The Facts. Prohealth.com, January 2007.
 * Pacing: An additional strategy to manage fatigue in chronic fatigue syndrome by Ellen M. Goudsmit and Sandra Howes.

Blogs and articles:

 * The Just ME blogger, Sally Burch, has written about self-pacing and the energy envelope in a post called "Play-Up & Lay-Up" not "Boom & Bust".


 * Solve ME/CFS Initiative - Managing Your Energy Envelope by Bruce Campbell (pdf)
 * Pacing by Numbers: Using Your Heart Rate To Stay Inside the Energy Envelope by Bruce Campbell.
 * Bruce Campbell, PhD, has included the Envelope Theory in chapter 7 of his manual, Recovery from Chronic Fatigue Syndrome: One Person's Story
 * Health Rising - Coping vs Energy Envelope in CFS

Notable studies:

 * Goudsmit et al. (2012). Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document.(Full text).
 * Jason et al. (2008). The Energy Envelope Theory and myalgic encephalomyelitis/chronic fatigue syndrome. (Full text).
 * O' connor et al. (2017). Energy envelope maintenance among patients with myalgic encephalomyelitis and chronic fatigue syndrome: Implications of limited energy reserves. (Full text).