Introduction - Managing Chronic Fatigue Syndrome and Fibromyalgia, 2015 Edition

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(Note: From the 2015 edition of our book.)

This book offers a message of hope. Even though there is so far no cure for either Chronic Fatigue Syndrome and fibromyalgia, there are many things people with the two conditions can do to improve their quality of life and in many cases to improve their level of functioning. The strategies you’ll find here can help you reduce pain and discomfort, bring greater stability, and lessen psychological suffering.

Through reading this book and using the strategies you find here, you can take an active role in improving your well-being. The approach you find here is based on the belief that you can change the effects of long-term illness, and even its course, through your efforts.

I speak from personal experience. I came down with Chronic Fatigue Syndrome in 1997. I started the self-help program for the same reason that you picked up this book: I wanted to feel better and, if possible, get my life back. I discovered coping strategies one by one, learning from my experience and from the experience of people I met in our groups.

The idea for the program came from an earlier experience. Before becoming ill, I worked at the Stanford University Medical School as a consultant to self-help programs for chronic conditions. I saw people gain some control over illnesses like arthritis and heart disease by using self-help strategies like those you will find in this book. I was inspired by the many people who improved their quality of life and especially by those patients who were able to change the course of their illness using self-management. The self-management programs developed at Stanford have been offered to hundreds of thousands of people with chronic conditions over four decades and their benefits have been documented in many scientific studies.

When I came down with CFIDS, as it was commonly called then, one of my first questions was: Where is the self-help program for this condition? I thought that if a self-management approach could be useful for illnesses with well-established and reasonably effective medications, it should be all the more helpful for a condition with no standard or widely effective medical treatment. When I couldn't find a self-help class for CFS, I started one.

Our program was based on a few simple ideas, principally having a positive focus and learning from one another. I assumed that by getting together with other people with CFS and FM to talk about what each of us had found helpful and by supporting one another, we could gain some control over our illness. As the program developed, we incorporated many of the proven strategies from the medical self-help programs I had worked on.

When the program started, I functioned at about 25% of normal, but my health improved as the program developed. The pace was slow, but steady: about 1% a month over a period of about four years. Eventually, as I describe elsewhere (www.recoveryfromcfs.org), I returned to my pre-illness level of health. Ironically, much of the improvement occurred after I had concluded that recovery was out of my hands and unlikely.

The program you will find in this book is based on several beliefs:

A plan for managing CFS or fibromyalgia needs to be individualized for each person’s unique circumstances. Your CFS or fibro 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 age, finances, family situation and coping skills.

You can find things to help you feel better. These strategies are not aimed at curing your illness, but they can help reduce suffering and improve quality of life. Although some involve medication, many focus on changing your daily habits and routines.

Long-term illness affects many parts of your life, so managing it means much more than treating symptoms. You have also to deal with managing stress and emotions, getting support, and coming to terms with loss.

There are no magic pills for CFS or fibromyalgia. Most experts agree with the idea presented by Dr. Lapp in the Foreword that the most powerful treatment for both conditions is lifestyle change, which means changing our habits and how we live our daily lives. This is a gradual process, which requires discipline, patience and courage, but over time it can be transforming. One person in our program, remembering my rate of improvement, calls it the 1% solution.

In almost 500 groups since 1998, we have seen many people improve their lives. (You can read about some of them in the Success Stories section of this website. In our experience, the keys to improvement are a willingness to adapt and consistent use of the tools of self-management, especially pacing and stress management.

I hope you find in this book ideas for creating your 1% solution.

Bruce Campbell, PhD
Founder, CFIDS and Fibromyalgia Self-Help Program
October 1, 2014
Palo Alto, California