Review of Our First Classes
By Bruce Campbell
Note: The following article was published in the Nov/Dec 1998 CFIDS Chronicle, the magazine of the CFIDS Association of America. The article describes the experience of the first groups in the program. As the article explains, the course was originally titled "CBT for CFIDS."
Since then it has been renamed twice. The first change, to "CFIDS Self-Help", reflecting our focus on self-management. Then, after many people with fibromyalgia took the course, it was re-named a second time to become "CFIDS/Fibromyalgia Self-Help."
Two groups of PWCs (Persons with CFIDS) in California have recently completed an experiment in self-help. Seventeen 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 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 they feared going to the class implied they were denying the medical reality of CFIDS. As one 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, the self-help classes I had worked on at Stanford had 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.
Overcoming Reluctance
The course proved acceptable to participants, whatever their initial reluctance. Only one person dropped out, someone who moved away. Two others started late, so we ended with more people than we began with.
And attendance was good. On average, class members came to 11 of the 13 sessions. One of the groups has already organized itself as the "CBT Alumni" and plans to continue meeting on a regular basis to further their study and practice.
The first course rested on two other foundations other than CBT, reflecting aspects of my experience as a consultant to research projects at the Stanford Medical School: David Spiegel's group support research, and 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 live twice as long as women in control groups.1
His work shows the powerful effects of group support. Meeting with others who share a similar condition, especially if it occurs in an environment of respect and understanding, can have dramatic effects on a person's coping skills, self-confidence, and even survival.
Effective with Other Diseases
The arthritis and other chronic disease self-help courses have had significant success as well. Organized as six- to eight-session courses, they have been shown to reduce significantly doctors visits, pain and depression.2 They have been taught to over 200,000 people worldwide, using trained volunteers. The courses suggest that 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 three elements. The course outline was based in part on two British CBT projects, neither the infamous PACE trial. Our 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.
Emphasizing Support
Second, the meetings 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.
Third, the course also used elements from the chronic disease self-help programs. It had a fixed length, used problem solving and goal setting, and was patient-led.
Three Key Concepts
The course developed into a hybrid that blended these three elements into something unique. Because of this blending of ideas and the increased focus on self-management over time, subsequent groups were called "The CFIDS Self-Help Course".
The original class had three key ideas, which have continued to be central to our program:
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 learning new techniques as well.
2) Energy Envelope: We made extensive use of 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
More recently, the idea was mentioned as part of Dr. Paul Cheney's treatment pyramid. Part of 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: CFS causes fatigue, but the fatigue we experience may have additional causes as well. The other causes may include 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.
Measuring Success
Are the groups working? We hope to answer that question through a survey filled out by each group member three times: at the start of the course, at the end of the course, and six months after the end. With the first two sets 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 Michael Sharpe and his colleagues at Oxford.6 Thirty CFS patients were given standard medical care plus 16 sessions of CBT over four months, while a control group received standard medical care alone. Patients had been ill an average of a year and a half, and had a significant level of disability: an average score of 72 on the Karnofsky scale 7.
This rating method has been used for many years in the evaluation of disability in a variety of diseases. The goal was a Karnofsky score of 80, reflecting a condition in which a person has a normal level of functioning (for example, can work full-time), even though still experiencing symptoms.
About 3/4 of the patients who received CBT improved to 80 or better over a year, in comparison to about 1/4 of the patients who received medical care alone. At the end of treatment, however, the improvement of the CBT group was not significantly different from that of the control group. Most of the improvement occurred in the eight months after the treatment was over.
The second 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 very similar to those of the Oxford group.
The patients who participated in our groups were different in two respects from those involved in the British projects. They were somewhat more disabled; their average Karnofsky score when we started was 69 in comparison to 72 in the Oxford group. And they had been sick far longer, an average of 7 years in comparison to a year and a half in the British group.
Length of illness is important for estimating prognosis for recovery. As Dr. David Bell says: "The majority of patients with CFIDS are doing well five years after becoming ill....When a patient's symptoms persist for five years, it is unlikely the illness is going to improve much after that. If there is going to be resolution, it seems to happen within five years."9
A group of patients sick an average a year and a half has a good prognosis for recovery. A group in which 2/3 of the patients have been ill for more than 5 years has a steeper hill to climb.
Viewed in that context, our results after six months are encouraging. About 1/3 of the students, including several ill for more than five years, experienced noticeable improvement. And the average Karnofsky scale score for the group as a whole increased to 72 (identical with the starting level of disability in the Oxford group).
In addition, students reported that on average they had reduced their daytime rest by about 1/4 and their fatigue by about 10%. (Some students reported resting more than before; they were proud that they were learning to live 'inside the envelope' instead of exhausting themselves through overactivity.)
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 patients with 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. Attendance at the course was high (averaging 11 out of 13 sessions) and attrition was low.
Preliminary results from this initial set of two groups were promising. Although composed of patients sick for an average of 7 years, the groups reduced their disability level somewhat and increased their confidence in their ability to control the illness. Some students improved dramatically. We hope that, like Michael Sharpe's patients, we will improve more after treatment than during.
References
1) Spiegel, David, 1993. Living Beyond Limits. New York: Times Books.
2) The Arthritis Self-Help program is described in Pincus, Theodore, 1993. "Arthritis and Rheumatic Diseases: What Doctors Can Learn From Their Patients." In Goleman, Daniel and Gurin, Joel. Mind Body Medicine. Yonkers, New York: Consumer Reports Books.
3) King, Caroline, Jason, Leonard, et.al., 1997. "Think Inside the Envelope". CFIDS Chronicle, Fall: 10-14.
4) Anderson, Dean, 1996. "Recovery from CFIDS." CFIDS Chronicle, Winter: 27-29.
5) Hoh, David, 1998. "Treatment at the Cheney Chinic." CFIDS Chronicle, July/August: 13-14.
6) Sharpe, Michael, et. al., 1996. "Cognitive behaviour therapy for the chronic fatigue syndrome: a randomised controlled trial." British Medical Journal, 312 (Jan 6): 22-26.
7) Karnofsky, DA, et. al., 1948. "The use of the nitrogen mustards in the palliative treatment of carcinoma." Cancer, 1:634-656. For a discussion of the Karnofsky scale and an alternative method to measure disability, see pp. 123-4 in reference 9.
8) Deale, Alicia, et. al., 1997. "Cognitive Behavior Therapy for Chronic Fatigue Syndrome: A Randomized Controlled Trial." American Journal of Psychiatry, 154,3 (March): 408-414.
9) Bell, David, 1995. The Doctor's Guide to Chronic Fatigue Syndrome. Reading, MA: Addison-Wesley.
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