The strategy known as pacing is based on the observation that people with ME 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 Goudsmit for use by people with ME, using information from Drs. Ramsay, Parish and Dowsett. During the nineties, details of this approach were disseminated through the various patient groups, so people were no longer left to discover pacing through trial and error.1
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” (Ramsay. Medical Update 1990, no. 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. Ho-Yen wrote in his book, “learn to listen to your body. It will tell you when there is a problem”.
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, you can make a list of things which need to be done per week. Make sure you allow some space between the most tiring of the activities. If you still do the housework yourself, wash one day, hoover the next. Also, try to include at least one quiet day after something particularly stressful or exhausting. 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.