Another key element in my approach to CFS was knowing and working with other patients through a self-help program I created. I started looking for a self-help program for people with CFS almost as soon as I was diagnosed. My work at Stanford had shown me that a self-help course for people with long-term illness could be a powerful complement to medical care, offering coping techniques and support from fellow patients in a positive, problem-solving setting. Working as a consultant to medical self-help programs, I had seen people gain some control over diseases like arthritis and cancer by using self-help strategies. I saw many people improve their quality of life and sometimes even change the course of their illness by taking responsibility for those things under their control.

I thought that a self-help program for CFS could be even more valuable than the ones I had known for other illnesses. I reasoned that if self-help could be useful for illnesses with well-established treatments, it should be even more helpful for a condition with no standard or widely effective treatment. When I couldn’t find any such groups for people with CFS, I decided to start one. I thought that by getting together with other patients to talk about what each of us had found helpful and by supporting one another, we could gain some control over our illness.

The first version of the course was based on three foundations. One was Cognitive Behavior Therapy or CBT, which I was familiar with from my previous work and which was then gaining attention because of its use in England as a treatment for CFS. The second was the self-help programs I had known at Stanford, especially the Arthritis Self-Help course. Like our program, the arthritis course is taught by trained volunteers, most of them patients. The third was another program at Stanford, Dr. David Spiegel’s breast cancer support groups, which became famous because participants lived twice as long as controls. I tried to combine elements from these three approaches. We used concepts from the CBT program, tools and ideas from the arthritis class, and also tried to provide a strong element of support.

The content of the course focused on three key ideas, ones that have remained central to the course ever since. The first was the idea of self help: the belief that how one lives with chronic illness can change its effects and perhaps its course. The second was the energy envelope: the idea that illness limits energy, but that patients can reduce symptoms and the severity of relapses by accepting the limits imposed by the illness (living “inside the energy envelope”). The third was the idea of using multiple coping strategies. Because patients usually have more than one symptom and each symptom may have more than one cause, it may help to employ a variety of techniques.

In the first year or so, we called our program the CFIDS Self-Help course and offered the class in several locations in the San Francisco Bay Area and then over the Internet. When many people with fibromyalgia started taking the course, we changed our name to CFIDS/Fibromyalgia Self-Help. The course went through many versions during the first several years, but the focus was always the same: patients sharing what worked to help them feel better and improve their quality of life.

At the same time the program was expanding, my health was improving. Using the ideas and techniques you'll find in this booklet, I gradually got better. The course was not just a summary of what worked for me. It couldn’t have been that, since I began the course just after being diagnosed, when I was searching for things that might help. Rather, the groups were a place where I thought people could learn from one another and share support. The content of the course went through many revisions, as I learned more about the illness and what helped people gain some control. At the start, I was as much a student as anyone else, using the course to understand CFS and develop a strategy for living with it.

The self-help program functioned for me as a community of healing. I knew that people respond in many ways to serious illness. Some look for a miracle cure; others spend their time focusing on their losses. Believing it was important to be around people who were both realistic and positive, I tried to create a setting in which people could share what worked to help them feel better.

As the program developed, it had some important unintended consequences. Because I stopped working and dropped out of my volunteer commitments shortly after becoming ill, fellow patients became perhaps my most important community. I think that served me well. I took CFS patients to be my peers, not healthy people. That meant that I measured myself in comparison to them, not to my peers from work. That comparison took a lot of pressure off.

Another consequence that I didn’t recognize at the time was that leading the class helped me deal with loss. As I mentioned earlier, illness stripped away many of my roles and activities. Developing the self-help program allowed me to create new relationships and find new meaning. By replacing my old goals with different ones, and by focusing on what I was still able to do, I found a way to be useful even when previous roles had been taken away.

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