Including the surprising physiological finding that suggests a 'pacing and switching' strategy for ME/CFS patients
[Editor's note: What is pacing? It is an evidence-based strategy that helps CFS (and Fibromyalgia) patients keep as active as possible to limit the complications of inactivity while avoiding the relapses that result from over-exertion. "Thousands of patients have found it useful for many years. And above all, it is unlikely to cause harm!" explains Dutch pacing expert Dr. Ellen M. Goudsmit, PhD.
In fact, clinical trials and patient surveys alike indicate that about 9 out of 10 CFS patients who participate in a pacing regimen believe it has helped them significantly. FM patient-expert Claudia Craig Marek, author of The First Year: Fibromyalgia, maintains that "With fibromyalgia, pacing is always the key to every endeavor." And many prescribe use of a heart rate monitor to keep exertion within an ideal range or 'envelope', as outlined recently in the journal article “Exercise prescription for individuals with Chronic Fatigue Syndrome” (www.mja.com.au ), published for general practitioners by motion and exercise scientists at the University of Western Australia in Perth.]
The strategy known as pacing is based on the observation that people with ME (CFS) tire easily. It’s one of the main characteristics of the illness. The approach is also used by people with multiple sclerosis, Parkinson’s disease, and other medical conditions where fatigue plays a major role.
The concept was adapted by Dr. Goudsmit for use by people with ME, using information from ME experts Drs. Melvin Ramsay, MD, J. Gordan Parish, MD, and Elizabeth Dowsett, MD. During the 1990s, details of this approach were disseminated through the various patient groups, so people were no longer left to discover pacing through trial and error. (Note: Critics have pointed out that pacing is “common-sense” and have questioned the need for information sheets. However, many patients struggle for months while they identify the best way of managing their limited energy levels. This is illustrated by the reports of the “boom-bust” cycle in medical journals, and of stories in the lay press about “overdoing” it and constant relapses. The term ‘pacing’ was not in general usage in relation to ME before 1989.)
The advice was further refined a few years ago as a result of feedback and new research.
The aim of pacing is to remain as active as possible but to avoid the relapses resulting from over-exertion. Patients may try to increase their activity levels every few days, as long as they remain “within the limitations which the disease imposes.” 1
In practice, pacing means stopping an activity when you feel you have reached that point where pleasant tiredness becomes unpleasant, where arms or legs begin to feel weak, or where one starts to feel unwell or sick. Some might find it more helpful to rest for a while at the first sign of muscle weakness. As Dr. Darrel Ho-Yen [head of virology at Raigmore Hospital in Inverness, Scotland] wrote in his book Better Recovery from Viral Illnesses, “Learn to listen to your body. It will tell you when there is a problem.”2
Making a rough plan of one’s activities for the day or days ahead is fine as long as you rest when you feel you need to. Pacing does not require you to set goals and achieve targets. The idea is to make limited energy go further. For instance:
n You can make a list of things which need to be done per week.
n Make sure you allow some space between the most tiring of the activities.
n If you still do the housework yourself, wash one day, vacuum the next.
n Also, try to include at least one quiet day after something particularly stressful or exhausting.
n If you are severely affected, you may require three free days, or even a week or more.
You will know from experience how you tend to respond to various activities and what you can manage per day without exacerbating the illness.
Some specialists recommend keeping a diary. This should include details of activities and symptoms, as well as food eaten and any stressful events. As most relapses do not occur at random, diaries can help you to identify triggers and reveal the relationship between exertion and symptoms. In the beginning, it is also useful to include an assessment of one’s emotional state, as stress saps your energy and undermines your immune system.
Other things to consider. For example:
n If you do the washing up by hand – that is, if you are the dishwasher in your house – then leave the plates, etc. to dry in the rack. It’s less exhausting and just as hygienic.
n Check to see if a neighbor or community scheme is able to help with one shopping trip per week, or if you can get some things via the Internet.
n If you need several tests in the hospital, ask if they can arrange for you to have them all during one visit.
n And “never stand when you can sit.”
It’s a question of experimenting and seeing what works for you. The basic rule is simple: Don’t over-exert or push yourself when your body lets you know that you are running out of stamina.
When should you increase your level of activity? In their book Chronic Fatigue Syndrome (CFS/ME): The Facts, published in 2000, CFS patient Frankie Campling and Michael Sharpe, MD, advise a gradual increase every few days. However, this assumes that the previous level did not lead to a marked exacerbation and that medically you are stable. Since pacing is determined by your symptoms, it follows that if you feel OK, then there’s no reason to stop. If you wish to increase your activity levels, you are free to do so as long as you don’t go over your limits in the process.
Pacing as originally conceived is not a type of treatment or therapy. It is simply a way of managing energy. Ideally, it should be part of a program, which also includes medical care, emotional support, dietary advice, etc. Indeed, it can be combined with cognitive-behavior therapy (CBT), counseling, and in fact everything except graded exercise. However, without medical advice and symptomatic treatment, any improvements are likely to be limited, according to Friedberg and Krupp.3
Regarding the theory: The reports of easy fatigability are consistent with research by Paul et al (1999).4 They found objective evidence of a loss of muscle strength, showing that this aspect of ME is not merely a result of (faulty) perception. Similarly, Jason et al (1999)5 documented reductions in energy linked to exertion. There are also studies by Lane and others (1998)6, 6-A who found metabolic abnormalities in patients with well-defined CFS (which includes many people with ME), and Sorensen and colleagues (2003)7, who reported an increase in a substance called C4a, part of the immune response to foreign cells, six hours after exercise. There was also an increase in the (mean) levels of pro-inflammatory cytokines. These increases, so long after exertion, were not evident in healthy controls.
The alternative to pacing - graded activity assumes that there is no disease process causing the fatigue. Any abnormalities are believed to be the result of a lack of fitness (deconditioning) and this is why proponents encourage patients to stick to predetermined plans and regimes.
Pacing makes no such assumptions. It recognizes the research linking ME with organic disease, plus the studies showing that deconditioning is not an important determinant of CFS (e.g., Bazelmans et al 2001,8 Sargent et al 20029).
Controlled studies which included advice on conserving energy and pacing yourself include those of:
1. Friedberg and Krupp 19943, who combined pacing with cognitive-behavior therapy, and
2. Goudsmit 199610, who assessed a broad program also including medical care, emotional support, and advice on sleeping and avoiding stress.
The first found that this combination was of limited benefit, except for those with depression. The second reported that about 80 percent of patients with post-infectious fatigue syndrome felt better as a result of this approach. Both were cited in a review of the best trials in the Journal of the American Medical Association.
Regarding the more plan- and target-based version of pacing as described by Campling and Sharpe, there are as yet no data on its effectiveness. Several large surveys have reported that the majority of patients find pacing helpful [including those published in the July/August 1999 issue of The CFIDS Association of America’s CFIDS Chronicle, and the August 2003 issue of Action for M.E.’s InterAction magazine]. It is difficult to know which version of pacing they used, but given the date of the [first survey] and the available literature at that time, it was probably not the approach promoted by Campling and Sharpe.
Pacing and Switching
As a result of experience AND the latest research, the original version of pacing was recently updated to ‘pacing and switching.’
Switching means changing activities to avoid tiring specific muscles. For instance, if you've been reading for a while, the advice is to stop before your eye muscles get tired and to do something, which involves a different muscle group, such as walking, washing clothes, eating, or talking. The idea is to do that for a while (stop before you reach your limit), and then switch again (go back to reading, for example).
The research behind 'pacing and switching' is the work by Paul et al (1999) 4. They found that the muscles of patients with ME lose strength in the same way as do those of healthy people during exercise but that unlike everyone else, the ME patients continue to lose muscle strength for at least 24 hours afterward. A consultant physician who has been studying ME since 1955 wondered if stopping an activity before the tiredness set in might keep the additional loss of muscle strength to a minimum. He began switching, and it worked.
It's not easy to stop activities that you haven't finished, and it requires a fair degree of self-discipline. On the other hand, if you can extend your energy levels even further with this method, why not give it a try?
The same rule applies to mental exertion (switch before you start feeling tired). Also, remember to leave enough time in between physical and mental activities, should you need to rest. If you're in a relapse, you may have to be strict – that is, 20 minutes of physical or mental activity should be followed by at least 20 minutes of rest. It is very restrictive, but this is not an illness one can fight.
Pushing yourself beyond the fatigue barrier does not make you feel better, unless you are already well on the way to recovery. See rest not as a restriction, but as part of the healing process. And remember that as you improve, you should be able to do more and rest less.
If you are in a good period, do not be tempted to exceed your established limits, at least, not by very much. A sudden increase in one’s energy should be enjoyed, but take things slowly.
Other Descriptions of Pacing
Dr. Charles Shepherd’s 1999 book Living with ME - Chronic Post-Viral Fatigue Syndrome has some very helpful advice on learning to manage one’s energy. He recommends pacing for a while until “stable,” then increasing one’s activity levels, though staying within your limits. (Note: Dr. Ramsay’s ideas about graduated activity within the limits imposed by the illness may be particularly suitable for people who have not been ill long or who do little more than the basics, such as dressing and eating. They can gradually increase the time or distance walked per day or every few days, as tolerated. After one has established one’s ‘limits,’ one can introduce other activities and practice pacing as described.)
Pacing Versus Graded Activity
As noted above, pacing does not rely on plans, targets, or goals. It depends on how you feel. This is one of the essential differences between this strategy and graded activity.
n Those advocating graded activity encourage consistency in order to avoid the ‘boom-bust’ cycle of overexertion and relapse.
n Pacing, on the other hand, limits the number and severity of relapses so you don’t get these cycles.
Those advocating pacing accept that graded activity is a good way to increase one’s fitness, and that it is also helpful in dealing with stress or depression.
n There is no evidence that graded activity is effective for ME patients with neurological or immunological symptoms,
n And indeed, there is no evidence that the theory on which it is based is applicable to the majority of patients with complicated fatigue syndromes.
n Thus from an evidence-based perspective, it is hard to recommend graded activity as an approach for everyone with ME.11
However, if people have limited their activity levels due to fear or misinformation, or if people are well on the way to recovery, then gradually increasing activity levels is not likely to do any harm.
CMO Working Group Report & Jason’s ‘Envelope’ Theory of Pacing
In 2002, a working group commissioned by the Chief Medical Officer of England and Wales produced a report (the CMO’s working group report) advising on best practice guidelines to improve the quality of care and treatment for people with CFS/ME. The section on pacing emphasizes the ideas of Professor Leonard Jason, PhD [head of the CFS research team at DePaul University in Chicago] and his colleagues.
Their version of pacing is based on the ‘envelope’ theory, which posits that if you keep your expended energy within the ‘envelope’ (limits) of perceived energy, your fatigue will reduce and your perceived energy levels will rise. One can then gradually increase expended energy without exacerbating fatigue.
Jason’s approach depends on previously collected data for fatigue and energy (used and perceived). One case history from the literature describes a person who discovered that he was always exhausted late in the afternoon. He was therefore advised to reduce his energy expenditure before that, and this had the desired effect.
However, ME is not as predictable as work-related fatigue. And as Professor Jason’s own research has shown, there is often a delay between exertion and feeling unwell.12 As far as ME is concerned, it is often difficult to make detailed plans in advance. You may have a general idea of what you can do, but stressors, concurrent infections, the menstrual cycle, and a host of other factors can influence how you feel on a particular day. Pacing can reduce some of the fluctuations associated with the illness, but not all.
Finally, it should be noted that Jason, in line with other specialists, advocates pacing as part of an illness management program.
Concerns About Pacing
Some psychiatrists have voiced concerns about the close monitoring of symptoms (introspection) and the effect this may have on how the patient feels. It has also been pointed out that some complaints reported by those with CFS may be the result of secondary problems. Depression and nutritional deficiencies can increase tiredness, and lack of fitness can make individuals feel dizzy when they first get out of bed. Pacing is not an appropriate strategy for any of these.
However, the solution is not to dismiss pacing as a concept, but to train more specialists who can make an accurate diagnosis, monitor the patient’s progress, and treat the additional problems as they occur.
As for introspection, there has been no research indicating that this has an adverse effect on the severity of symptoms or the course of the illness in the vast majority of patients with ME or CFS. It is also important to differentiate between the awareness of one’s body, which is required for pacing, and introspection, which is generally not used to improve the management of the condition.
Another concern which was expressed after the publication of the CMO’s report is that without gradual increases in activity, people will not improve (e.g., NIH executive Stephen E. Strauss, 200213).
This view reflects the lack of knowledge about pacing. As it helps people to make their limited energy go further, they are often able to do more than they could previously. Conserving energy does not mean total avoidance of activity.
Before the interest in graded activity, about 70 percent of patients with acute onset, uncomplicated ME improved to some extent and were able to lead a near normal life by pacing themselves (e.g. Levine et al 199714). It may not work for everyone, but it’s not likely to make people worse.
Pacing, with or without switching, will not help everyone with ME or CFS, and it should not be perceived as a treatment. It’s a strategy that will limit the number and severity of relapses and avoid at least some of the complications of inactivity. It’s an evidence-based approach which takes account of all the research, and which thousands of patients have found useful for many years. And above all, it is unlikely to cause harm!
1. Ramsay, AM. Dr. Melvin Ramsay’s advice on exercise for chronic ME, quoted in Medical Update, 1990, no. 1. This was a publication of the former International Federation of ME Associations (IFMEA). See also Ramsay, AM. Myalgic Encephalomyelitis and Postviral Fatigue States. Second Edition. London: Gower Medical Publ. 1988. p. 31.
2. Ho-Yen, D. Better Recovery from Viral Illnesses. Dodona Books. Third Edition. (Note, Dr. Ho-Yen does not refer to his approach as ‘pacing’ and it’s not identical to my advice. But it’s close and based on the same theory and scientific evidence).
3. Friedberg, F and Krupp, LB. “A comparison of cognitive behavioral treatment for Chronic Fatigue Syndrome and primary depression.” Clinical Infectious Diseases, 1994, 18, (Suppl.1), S105-S110.
4. Paul, L., Wood, L., Behan, WMH and Maclaren, WM. “Demonstration of delayed recovery from fatiguing exercise in Chronic Fatigue Syndrome.” European Journal of Neurology, 1999, 6, 63-69.
5. Jason, LA., Tryon, WW., Taylor, RR., King, C., Frankenberry, EL and Jordan, KM. “Monitoring and assessing symptoms of Chronic Fatigue Syndrome: Use of time series regression.” Psychological Reports, 1999, 85, 121-130.
6. Lane, RJM., Barrett, MC., Woodrow, D., Moss, J., Fletcher, R and Archard, LC. “Muscle fibre characteristics and lactate responses to exercise in Chronic Fatigue Syndrome.” Journal of Neurology, Neurosurgery and Psychiatry, 1998, 64, 3, 362-367.
6-A. Behan, WMH, More, IAR, Behan, PO. “Mitochondrial abnormalities in the postviral fatigue syndrome.” Acta Neuropathologica, 1991, 83, 61-65.
7. Sorensen, B., Streib, JE., Strand, M., Make, B., Giclas, PC., Fleshner, M and Jones, JF. “Complement activation in a model of Chronic Fatigue Syndrome.” Journal of Allergy and Clinical Immunology, 2003, 112, 397-403.
8. Bazelmans E, Bleijenberg, G., van der Meer, JWM and Folgering, H. “Is physical deconditioning a perpetuating factor in chronic fatigue syndrome? A controlled study on maximal exercise performance and relations with fatigue, impairment and physical activity.” Psychological Medicine, 2001, 31, 107-114.
9. Sargent, C., Scroop, GC., Nemeth, PM., Burnet, RB and Buckley, JD. “Maximal oxygen uptake and lactate metabolism are normal in chronic fatigue syndrome.” Medicine and Science in Sports and Exercise, 2002, 34, 1, 51-56.
10. Goudsmit, EM. “The psychological aspects and management of Chronic Fatigue Syndrome.” PhD. Brunel University. 1996.
11. Lapp, C. “Exercise limits in Chronic Fatigue Syndrome.” American Journal of Medicine, 1997, 103, 83-84.
12. Jason. LA., Melrose, H., Lerman, A., Burroughs, V., Lewis, K., King, CP and Frankenberry, EL. “Managing Chronic Fatigue Syndrome.” AAOHN Journal 1999, 47, 1, 17-21.
13. Strauss, SE. “Caring for patients with Chronic Fatigue Syndrome: Conclusions in CMO’s report are shaped by anecdote not evidence,” BMJ, 2002; 324: 124-125 (19 January).
14. Levine, PH., Snow, PG., Ranum, BA, Paul, C and Holmes, MJ. “Epidemic neuromyasthenia and Chronic Fatigue Syndrome in West Otago, New Zealand.” A 10-year follow-up. Archives of Internal Medicine, 1997, 157, 750-754.
* Reproduced with permission of the author, Dr. Ellen Goudsmit. © Dr. E.M. Goudsmit May 2004. From the Axford’s Abode ME/CFS site at http://freespace.virgin.net/david.axford/me/me.htm
Note: The information provided here has not been evaluated by the FDA and is not meant to prevent, diagnose, treat, or cure and illness, condition, or disease. It is essential that you never make a change in your personal health support plan or regime without first researching and reviewing it in collaboration with your professional healthcare team.