Looking Back: Our First 5 Years

By Bruce Campbell

March 2003 marks the fifth anniversary of our self-help course. I thought this might be a good time to explain how the course evolved and to outline the beliefs on which it is based.

The first version of the course started in March 1998, shortly after I was diagnosed with CFIDS. My illness had begun the previous year and I functioned at about 25 percent of normal. The idea of a self-help course for people with CFIDS occurred to me because of work I had done at the Stanford University Medical School prior to becoming ill. Working as a consultant to medical self-help programs, I saw people gain some control over illnesses like arthritis and heart disease by using self-help strategies such as those we teach. Self-help was not presented as a cure, but rather as a way to live better with a long-term condition. 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.

A self-help program for CFIDS seemed a “natural” to me. I thought 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. I looked for such a group. When I couldn’t find one, I started what has become our self-help program. 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.

In the first three years, we 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 broadened our scope to become CFIDS/Fibromyalgia Self-Help. The course went through many versions during this time, but the focus was always the same: patients sharing what worked to help them feel better and improve their quality of life. We have now offered almost 100 groups and, thanks to the Internet, have welcomed people from around the world to our course. Our website, which includes information about our program plus bi-weekly articles on coping strategies, is now visited by several thousand people each month.

At the same time the program was expanding, my health improved. Using the ideas in the course, I gradually got better. The pace was slow but steady, an improvement of one to two percent a month over a period of about four years. Today I consider myself to be recovered. (You can read two accounts of my recovery posted elsewhere on the site. The first was published originally in the CFIDS Chronicle, the magazine of the CFIDS Association. The second was written especially for our site.) Given the low recovery rate from CFIDS, my success with self-help is unusual, certainly due in part to luck. The word luck just means that we don’t understand yet why some cases of CFIDS are less severe than others or why some people recover. My approach was to accept that I had a long-term illness and to make lifestyle adjustments to improve my quality of life. I did not know whether or not I would recover, but I felt confident I could find things that would make me feel better.

Our program is based on several beliefs:

1. Each person with CFIDS or fibromyalgia is different. Your case may be more or less severe than another person’s. Also, your ability to manage your illness is affected by other factors, such as your finances and family situation. A plan for managing chronic illness needs to be individualized for your unique circumstances.

2. People can find things to help them feel better. These strategies are not aimed at curing CFIDS or fibromyalgia, but they can help reduce pain and discomfort, bring greater stability, and lessen psychological suffering. Self-management is a way of life, not a quick solution. It offers you tools to feel better through changing your daily habits and routines.

3. Finding what works often requires experimentation. Some techniques work better at some times than at others or for some people better than for others. If one strategy doesn’t work for you at some point, another may.

4. You may not be able to restore your old life, but you can build a new life in its place. Having CFIDS or fibromyalgia means coming to terms with loss. You may not live the life you had expected, but you can create new meaning by living the best life possible under the circumstances.