PACE Trial Shows Two Forms of Pacing More Effective Than Third Type
By Bruce Campbell
The Lancet article reporting the PACE research said that Cognitive Behavior Therapy (CBT) and graded exercise were shown to be more effective than adaptive pacing. While I share many of the criticisms that others have made of the trial, I was curious about what CBT and GET meant in the project: what did patients actually do?
I tracked down the manuals given to participants, which are available on the trial's website. I was surprised at what I found. The researchers defined CBT and graded exercise in ways that are very similar to what we call pacing.
Graded Exercise in PACE
GET, which the researchers also called "incremental pacing," begins with keeping a daily log to discover one's current activity level. This information is used as a starting point for establishing a consistent level of activity, called a person's baseline. Significantly, the baseline may involve reducing one's activity level.
Once a person has stabilized, he or she can begin a very gradual expansion of activity, but only as tolerated by the body. The first activity selected for expansion should be one that can be done daily, even on one's worst days. Once the activity can be done consistently (at least five days a week), a person can increase the time of the activity, but only a little at a time.
Because sleep is often a problem for people with CFS, the GET manual recommends improving sleep using commonly-suggested sleep hygiene techniques such as use of a wind down routine before going to bed, gradual elimination of daytime sleeping, and avoidance of caffeine, nicotine and alcohol in the hours before bedtime.
The GET manual also recommends spending 20 minutes a day in relaxation and it provides a script to use which focuses attention on breathing and gradually relaxing muscle tension.
CBT in PACE
CBT in the PACE trial, also called "complex incremental pacing," has many similarities to the trial's version of GET. CBT also begins with keeping an activity diary to determine current levels of activity and rest, referred to as the baseline. (People are also instructed to keep a sleep diary to identify sleep problems, which are addressed later, using many of the same strategies as those described in GET.)
The person then creates a program of scheduled activity and rest, with the goal of carrying out the same amount of activity and rest each day in order to avoid the cycle of "boom and bust." Initial rest time is set at average amount of rest in two weeks of record keeping. The manual recommends several short rests each day rather than one long rest and breaking up periods of activity as well.
After establishing a consistent daily pattern of planned activity and rest, a person may be able to gradually increase their activity level by setting targets for themselves and working gradually toward them, but some people will need to reduce their activity, at least initially. People are advised to create daily and weekly plans.
CBT also involves examination of thought patterns, but this was not introduced until a person established a consistent pattern of activity and rest. (Addressing unhelpful thoughts is listed as the sixth of seven components of CBT, following four related to pacing and one for sleep.)
The steps for this approach are not laid out as clearly as those for GET and CBT. The researchers explain that the materials for this approach were written for the trial, while materials used with GET and CBT dated back to the 1990s. So one way to view the results of the trial would be to say that two mature systems for teaching pacing were found superior to third, less mature approach.
In any case, adaptive pacing therapy (APT) has many similarities to the other two. It also involves establishing a stable and sustainable level of activity, then increasing activity level as improvement occurs.
Adaptive pacing begins with the use of diaries to discover the level of activity that will minimize symptoms, called establishing a baseline. Beyond that, pacing involves learning relaxation techniques; budgeting energy by prioritizing and spreading activities throughout the week; alternating activity and rest; making weekly plans; improving sleep; and using appropriate posture and movement.
Using the PACE Approach to Pacing in Your Life
The similar approaches to pacing found in the three main treatment arms of the PACE trial suggest a three-step process for using pacing to bring stability and, possibly, to increase activity level. (Note: Improvement with CFS requires discipline, hard work and patience.)
1) Keep an Activity Diary
Fill out an activity diary for two weeks to find your current amounts of activity, rest and sleep. (See an example and a blank diary.) Activity includes personal care, cooking and eating, childcare, chores, work for pay, exercise, errands, appointments and socializing. Rest includes lying down with your eyes closed and also light reading, TV and listening to music, if you find them restful. Take sleep to be the time between going to bed at night and rising in the morning.
Total the amount of time spent in the three categories and divide by 14 to find the daily average for each. For example, if you spent 28 hours resting during the two weeks, the average was two hours per day.
2) Adjust Your Life to a Consistent Daily Schedule
Then adjust your life to similar amounts of rest and activity each day. This is likely to take an extended period of time. Use the averages calculated in step 1 as a starting point, though you may have to adjust the amount of activity downward initially to bring symptoms under control.
You can move toward consistency using targets or short-term goals. It can help to make daily and weekly plans. Increases in activity should be limited to what can be done consistently (at least five days a week).
Your daily schedule should include a variety of activities (physical, mental and social); activities should be of varying intensity: low, medium and high. Activity should be alternated with periods of rest.
You are likely to experience better symptom control and need less total rest time if you take several shorter rest periods rather one or two longer times. People with severe CFS often do well with 10 or 15 minute rests every hour or two.
3) Adjust Your Sleep
Because sleep is often not restorative in CFS, addressing sleep problems is also important. Adjustments may include changes in sleep hygiene such as using the bed only for sleep and sex, insuring a quiet and comfortable sleep environment, putting limits on time spent in bed at night, reducing or eliminating daytime naps. (We would add that it often involves the use of medications and addressing sleep disorders such as sleep apnea.)
Note: There is more to pacing than these three steps, but the steps offer a good starting point.