by Bruce Campbell
CFIDS/Fibromyalgia Self-Help Program
Reprinted with permission from the CFIDS/Fibromyalgia Self-Help Program: CFIDSselfhelp.org
The previous article was originally published in the Nov/Dec 1998 CFIDS Chronicle and is reprinted here with permission. The article describes the experience of the first groups in the CFIDS Self-Help program. As the article explains, the course was originally titled “CBT for CFIDS” but was renamed later to reflect more accurately the blending of CBT (Cognitive Behavioral Therapy) with group support and principles of self-management.
Two groups of PWCs in California have recently completed an experiment in self-help. A total of 17 of us met once every two weeks from March to September to study “CBT for CFIDS,” a course I organized to explore the use of cognitive behavior therapy (CBT) as a treatment for chronic fatigue and immune dysfunction syndrome.
You might ask why a group of PWCs would voluntarily study and practice CBT. For many people, CBT symbolizes the attitude that CFIDS is “all in your head.” It often seems that a person’s attitude toward CBT is used to determine whether he or she acknowledges the medical reality of the illness or sees it as merely a psychological condition.
Many of the students began the class with this view of CBT and some were even reluctant to participate, either because of skepticism about CBT or because, as one member said, “I was afraid that coming to the group would be supporting the position that it’s all in our heads.”
I had a different view. As someone who had worked on self-help programs for arthritis and other chronic illnesses, I believed that such programs complement regular medical care and can help patients expand their coping skills. For me, acknowledging the medical reality of an illness is consistent with learning to cope better. Believing that our attitudes and coping skills are important to recovery is not the same as believing that CFIDS is “all in your head.”
CBT seemed a promising approach for treating CFIDS for several reasons. First, CBT has proven effective in treating a wide variety of conditions. Developed originally for psychological problems such as depression and anxiety, it has also been useful for chronic pain, cancer, arthritis and other medical conditions. Second, CBT had been used successfully as a treatment for CFIDS in two recent research projects in England. Third, CBT and other similar approaches have been shown to be helpful in group settings and don’t require one-on-one therapy to be effective. Given that there is so far no cure for CFS, a self-help approach based on the assumption that we can affect the course of illness seemed plausible.
The course proved acceptable to participants, whatever their initial reluctance. Only one person dropped out (moved away). Two others started late, and attendance was good. On average, class members came to 11 of the 13 sessions. One of the two groups has already organized itself as the “CBT Alumni” and plans to continue meeting on a regular basis to further their study and practice.
Besides CBT, the course rests on two other foundations, reflecting aspects of my experience as a consultant to research projects at the Stanford Medical School. These are David Spiegel’s group support research and his self-help groups for arthritis and other chronic diseases. Dr. Spiegel’s groups for women with advanced breast cancer have received much attention because the women participating lived twice as long as women in control groups.1
Effective With Other Diseases
The arthritis and other chronic disease self-help courses have had significant success, as well. The six- to eight-session courses have been shown to reduce significantly doctors visits, pain and depression. 2 They have been attended by more than 200,000 people world- wide, using trained volunteers. That experience suggests it is possible to provide significant help to people with chronic diseases at low cost using trained non-professionals.
In organizing the “CBT for CFIDS” groups, I hoped to combine these elements. The course outline was based on the British CBT projects. (Alicia Deale, the leader of one of the projects, kindly made her materials available to us.) Like the British programs, the course aimed to help students learn to reduce fatigue and other symptoms, to increase activity level safely, and to learn to break the activity/relapse cycle.
Our meetings also included a strong element of support. Part of each meeting was devoted to each person’s sharing about his or her life since the last meeting, and we attempted to create a climate of respect, understanding and encouragement. And the course used elements from the chronic disease self-help programs. It had a fixed length, used problem solving and goal setting, and was patient-led.
The course developed into a hybrid that blended these elements into something more than just CBT (Because of this blending of ideas, the next classes will be called “The CFIDS Self-Help Course.”)
Three Key Concepts
The class was built on three key ideas:
1) Self-help: The course is based on the principle that how we live with chronic illness can change its effects on us and may even change the course of the disease. The course aims to help patients take responsibility by building on the coping techniques they have already developed and by learning new techniques.
2) Energy envelope: We made extensive use of Dr. Leonard Jason’s concept of the “energy envelope.”3 This is the idea that PWCs have limited energy, but that we can reduce symptoms and the severity of relapses and over time expand our energy if we learn to accept the limits imposed by the disease–if we live “inside the envelope.”
This idea has been presented several times in The CFIDS Chronicle. Dean Anderson’s account of his eight-year recovery from CFIDS focused on the importance of recognizing his limits. He spoke of his “acceptance of the reality of the illness and of the need to lead a different kind of life.”4 Most recently, the idea was mentioned as part of Dr. Paul Cheney’s treatment pyramid. The foundation layer includes the challenge to “find the boundaries of what [PWCs] can do in terms of daily life, and then to stay within those boundaries.”5
One student summarized the meaning of the class for her by saying the course is “basically figuring out what makes me sicker, and then not doing those things anymore.”
3) Sources of fatigue: CFIDS causes fatigue, but the fatigue we experience may have additional causes, as well, including poor sleep, inactivity, depression and stress. These different factors may interact with one another to increase the total fatigue we experience in a kind of vicious spiral. In the class, we look at each of these other sources of fatigue and learn techniques for reducing their effect.
Are the groups working? We hope to answer that question through a survey filled out by each group member three times–at the start and end of the course and six months later. With the first two sets of surveys in hand, some comparisons to the two British CBT research projects can be made and tentative conclusions reached.
One of the British trials was conducted by Dr. Michael Sharpe and his colleagues at Oxford.6 Thirty CFIDS patients were given standard medical care plus 16 sessions of CBT over four months, while a control group received medical care alone. Patients had significant disability, averaging 72 on the Karnofsky scale.7 The goal was a Karnofsky score of 80, reflecting a condition in which a person has a normal level of functioning, though still experiencing symptoms. About three-quarters of those who received CBT improved to 80 or better over a year, in comparison to about one-quarter of those who did not. Most of the improvement occurred in the eight months after the treatment ended.
Another British project was conducted by Alicia Deale and colleagues in London.8 Working with similar groups of patients, this effort compared CBT with relaxation therapy. The results were similar to those of the Oxford group.
The patients who participated in our groups were different in two respects: They were somewhat more disabled; their average Karnofsky score when we started was 69. And they had been sick far longer, an average of seven years in comparison to a year and a half in the British studies.
Length of illness is important for estimating prognosis for recovery. As Dr. David Bell says: “When a patient’s symptoms persist for five years, it is unlikely the illness is going to improve much after that.”9 A group of patients sick an average of a year and a half has a good prognosis. A group in which two-thirds have been ill for more than five years has a steeper hill to climb.
Viewed in that context, our results after six months are encouraging. About one-third of the students, including several sick for more than five years, experienced noticeable improvement. And the average Karnofsky scale score for the group increased to 72.
In addition, students reported that, on average, they had reduced their daytime rest by about 25% and their fatigue by about 10%. (Some students reported resting more than before. However, they were proud that they were learning to live “inside the envelope” instead of exhausting themselves through over-activity.)
Students More Active
Students reported that they are now more active, and they increased by about 30% their confidence in their ability to control their CFIDS symptoms and to prevent relapses. This type of confidence, often called self-efficacy, has been shown to be crucial to improvement in chronic illness.
In conclusion, our experiment demonstrated the viability of a patient-organized and patient-led self-help program combining group support with tools for recovery. Our preliminary results were promising, and we are hopeful that, like Dr. Sharpe’s patients, we will improve more after treatment.
New classes are being organized and will be taught using an 11-chapter text written for the course. A leader’s manual is being written for testing this fall. For information, contact Bruce Campbell at the address below or visit the website for the CFIDS Self-Help Course at www.flash.net/~brucepa/cfidshelp.htm.
Author’s Note: Since this article was written, the CFIDS Self-Help program has expanded. The CFIDS Self-Help course is now offered in several locations in the San Francisco Bay Area and over the Internet. The CFIDS Helpbook, a guide for managing CFIDS, has been published.
Comments from Participants:
Loie Johnson, Palo Alto
“Bruce’s skilled leadership, the exceptional group support, and the CBT materials combined to produce results: improved health that all my friends and acquaintances notice and the bonus of renewed confidence and self-esteem. What a Positive experience this is. CBT gave me direction, focus and valuable new coping skills.”
Gayle deMille, Mountain View
“This class has helped me in setting reasonable activity goals and meeting them. It has allowed me to achieve the right mix of activity and rest, so that I can get things done without overdoing it and causing a relapse. The support and ideas from other group members have been invaluable.”
E.E. Ho, Redwood Shores
“The CBT class for CFIDS patients is the best thing that has happened to me since my diagnosis of CFIDs eight years ago. The class is enabling me to improve my quality of life and my daily productivity and gradually increase my exercise. The skills I am learning and the group support for applying them are giving me real hope for healing.”
1. Spiegel, D., (1993). Living Beyond Limits. Times Books.
2. Theodore Pincus describes the Arthritis Self-Help program in “Arthritis and rheumatic diseases: What doctors can learn from their patients,” in Goleman, D., & Gurin, J., (1993). Mind Body Medicine. Consumer Reports.
3. King, Caroline, Jason, Leonard, et. al., (Fall 1997). “Think inside the envelope.” The CFIDS Chronicle, 10-14.
4. Anderson, D., (Winter 1996). “Recovery from CFIDS.” The CFIDS Chronicle, 27.
5. Hoh, D., (July/August 1998). “Treatment at the Cheney Chinic.” The CFIDS Chronicle, 13-14.
6. Sharpe, M., et. al., (Jan. 6,1996). “Cognitive behaviour therapy for the chronic fatigue syndrome: A randomised controlled trial.” British Medical Journal, 22-26.
7. For a discussion of the Karnofsky scale and an alternative method to measure disability, see Bell, D., (1995). The Doctor’s Guide to Chronic Fatigue Syndrome, 123-4. Addison-Wesley.
8. Deale, A., et. al., (March 1997). “Cognitive behavior therapy for chronic fatigue syndrome: A randomized controlled trial.” American Journal of Psychiatry, 408-414.
9. Bell, D., (1995). The Doctor’s Guide to Chronic Fatigue Syndrome.
About the Author: Bruce Campbell is a PWC and a member of the Palo Alto and Redwood City, Calif., CFIDS support groups. He holds a PhD in social psychology and religion from the University of California and has been a consultant to more than a dozen research projects at the Stanford University Medical School. He may be reached at BrucePA@flash.net or 777 San Antonio Road, Palo Alto, CA 94303.
Reprinted with permission from The CFIDS Chronicle.