My Life as a 'CFS Scientist': Using Records to Gain Control
By Bruce Campbell
Note: This article is adapted from the online book Recovery from Chronic Fatigue Syndrome: One Person's Story.)
Looking back, I believe that the few minutes a day I spent keeping health records were one of the most important parts of my recovery from Chronic Fatigue Syndrome. My logs helped me in at least three ways. First, they showed me the connections between my actions and my symptoms, and, by documenting the links, took a lot of the mystery out of the ups and downs of my illness. Second, because reviewing my records was like looking at myself in a mirror, the records held me accountable. And, third, because they documented my successes, they were a source of motivation.
Record keeping was an integral part of my approach to living with CFS, so much so that I came to call myself a "CFS scientist." Early on, I realized that, because there were variations in my daily life, I could view my life as a series of experiments. For example, I went to bed at different times, had different length walks, spent varying amounts of time with people, and so on. Just living my regular life I was generating lots of "experimental data" in which my actions were the "causes" and my symptoms were the "effects." Then I recognized that I could generate more data by deliberately varying my patterns and activities. For example, I could walk varying distances and note the effects on my symptoms. I knew that I wasn't running a true experiment. With only one subject, I couldn't have a randomized controlled trial, but I felt confident that I could learn a lot by systematic self-observation.
Keeping records was crucial to this process. I was confident that having systematic notes about my life would enable me to see patterns and to identify links between my actions and my symptoms. I experimented with a variety of simple logs, each taking only a few minutes a day to complete. I made sure the logs were easy to fill out, because I knew that if they weren't, I wouldn't use them consistently. I wanted to make it likely that the time spent logging would be rewarded by insights. I also thought that if I made them too complicated, I wouldn't be able to make sense of all the data I collected. I wrote in my logs daily, then usually spent some time every few weeks analyzing the logs to look for patterns. Sometimes I went over my logs with a friend.
Linking Cause and Effect
The log I used the most was similar to the Activity Log, posted on the Logs, Forms and Worksheets page. I sought to understand the fluctuations in my illness by linking events in my life with my symptoms. The list of items that might be causes changed over time, but included things like the amount of sleep and rest I got, my overall activity level, exercise and stressors (both people and situations). For "effect" I rated each day from "+2" (very good) to "-2" (very bad). Sometimes I made two or three sets of ratings each day to see whether there were patterns within a day. Then I sought to understand what made my days different. Why were some days better than others?
Studying my records helped me to recognize fluctuations in symptoms by showing me that my CFS was worse in the morning and better in the evening, and that the effects of exertion were cumulative during a week. Also, logging showed me the connection between standing and symptoms, documented how much exercise was safe, and showed me my vulnerability to stress.
I also used my records to help me understand patterns over longer periods. For example, looking at my records for the year at the end of 1998 enabled me to quickly identify the causes of my relapses. It took only a little more time to develop a plan for avoiding them in the future. I began my review by identifying all my relapses during the year. I found eight. (I defined a relapse as symptoms so severe that I had to spend at least one full day in bed.) Then I looked for common causes and discovered that almost all the relapses were associated with either having a short-term illness or travel.
Last, I developed strategies to minimize the impact of each of these factors in the future. To combat relapses triggered by secondary illnesses, I decided to take two days of extra rest after the symptoms of the secondary illness ended before returning to my normal activity level. To minimize travel-related setbacks, I limited travel to a few hours' driving distance from home, doubled my regular daily rest periods for a few days before a trip, took two or three times as much rest as usual while away, planned for extra rest after returning home, and took a ten- to 15-minute rest for each two hours of driving. I think the two hours I spent on that analysis was the most productive time in my experience with CFS: I haven't had a relapse since.
Logging Shapes Behavior
I found that my logs, in addition to being a record of my behavior, also came to shape it. Sometimes, when I was tempted to think that increased symptoms were just part of the illness, my records showed that I had been more active than usual in the days before my symptoms increased. Seeing the evidence in black and white helped me to stick to my pacing routine. I could see how much better I felt when I was consistently within my energy envelope and how my symptoms increased when I went outside my limits. So my logging was also a way to hold myself accountable.
A student in one of our early groups took this principle even farther. She kept an elaborate calendar with a color rating for each day. She used green to note a minimal level of symptoms ("Go"). Yellow designated an increased level of symptoms and meant "warning, time to cut back a little." Red meant "stop, time to cancel commitments and rest."
Records as Motivators
Logging was also a good motivating tool. My records documented that some days were better than others. Seeing this motivated me to search for what I was doing that created good days so that I could increase their frequency. I also used my records to chart my progress over time. At the end of each month, I rated myself using a Rating Scale. Seeing written evidence of improvement gave me hope. It also motivated me to stick to my pacing routines. Each month, I totaled up the number of good days I had. Wanting to expand the number motivated me to be more consistent in staying within my energy envelope.
For all these reasons, I found that the benefits from a few minutes of record keeping a day were great. Even without a big grant from the NIH, my CFS science produced big rewards.
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