Pacing is a strategy used to avoid post-exertional malaise (PEM). All patients with ME/CFS suffer from some form of PEM. Patients who are mildly ill may only feel an increase in fatigue, while patients who have more severe form of the illness can suffer an exacerbation of all their symptoms, including swollen glands, flu-like symptoms, pain, insomnia, and a general “crash.”
According to Dr. Myhill, the reason patients with ME/CFS have such a marked response to exertion, whether its physical or mental, is that supplies of ATP, the molecule that supplies cellular energy, do not regenerate quickly enough after they are used. As a consequence, every cellular function is disrupted.
Staying within the “energy envelope,” or pacing, is one way a person with ME/CFS can help mitigate PEM. Avoiding activities which will place too great a strain on the body’s ability to produce adequate ATP is a key strategy of pacing, but adequate rest is equally as important. What is important in pacing is to avoid crossing the energy threshold.
Knowing when you have crossed the energy threshold is tricky. In part, it depends on how ill a person is. A severely ill patient crosses the energy threshold daily simply by being ill. However, mildly and moderately ill patients may not even be aware when they have “done too much.” For these patients, it is important to adjust activities to avoid the worst effects of PEM.
These are some important strategies to help patients pace:
- Rest between activities. No matter what you are doing, don’t do it continuously. Take frequent breaks.
- Stop before you feel like stopping. Often people with ME/CFS don’t know they have over-exerted themselves until it is too late.
- Don’t do anything that makes your heart pound. Avoid walking up stairs, running(!), standing too long if you have orthostatic intolerance, or doing any other activity that will increase your heart rate.
- Don’t push. Healthy people can push past weariness without any major long-term effects. But “no pain, no gain” can cause a permanent set-back in patients with ME/CFS.
- Always do less than you think you can do. People with ME/CFS almost universally think they can do more than they can. This is because they remember what they were able to do before they were ill. Making the adjustment to doing less, often much less, can be difficult. However, it is crucial.
- “Don’t stand if you can sit, and don’t sit if you can lie down.” This advice was given by Dr. Richard Bruno to his post-polio patients. It applies equally as well to people with ME/CFS.
- Know your limits. This strategy may be hard to implement in a disease that changes daily, if not hourly. But there are certain activities that most patients come to realize will push them over the edge.
- Plan ahead. Patients who are moderately ill can shop for themselves, take care of household tasks, and attend to their own needs. For these patients, planning ahead is a necessity. Don’t do more than one task a day! For example, if you have a doctor’s appointment, don’t also go shopping. If you need to attend a family event, find a time during the event to rest, retreat, or lie down.
Pacing for ME/CFS: The Facts
Dr. Ellen Goudsmit discusses how pacing developed as an accepted form of management for ME/CFS and explains why it works.
Pacing by Numbers: Using Your Heart Rate To Stay Inside the Energy Envelope.
Bruce Campbell suggests monitoring your heart rate to stay below your anaerobic threshold.
“Diagnosing and Treating Chronic Fatigue Syndrome”
Dr. Myhill’s book (available for free online) contains a number of helpful suggestions for pacing yourself.
The Spoon Theory Gave People the Wrong Idea About My Illness
This excellent article by Jennie Smales explains some of the pitfalls of managing an illness that is unpredictable.