This book is a
companion to the CFIDS/Fibromyalgia Self-Help course. I would like to
tell you how the course evolved and outline what you’ll find in the
book.
The course, which began
in 1998, was a response to my having CFIDS. 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 you’ll read about in this
book. 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. When I couldn’t find such a group, 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 changed our name to
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.
At the same time the
program was expanding, my health improved. I started at about 25
percent of normal but, using the ideas you’ll find in the book, I
gradually got better. I developed my coping strategies by trial and
error, learning from my experience and from the experience of fellow
patients. The pace of improvement was slow but steady, one or two
percent a month over a period of about four years. Today I consider
myself to be recovered. (You can read an account of my experience at www.recoveryfromcfs.org.)
Given the low recovery rate from CFIDS, my success with self-help is
unusual, certainly due in part to luck. In my mind, the key was not to
aim at recovery but rather to accept that I had a long-term illness
and to make changes that would help me feel better and improve my
quality of life.
The program you will
find in this book is based on several beliefs:
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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.
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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.
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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.
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While people with
CFIDS and fibromyalgia may not live the life they expected, they
can find meaning by living the best life possible under the
circumstances. You may not be able to restore your old life, but
you can build a new life in its place. |
I’d like to take this
opportunity to thank people who have helped with the development of
our program and the creation of this book. The first thanks go to the
students in our more than 125 groups, from whom I have learned so much
about coping with chronic illness. The following people read various
versions of the book, offering help that ranged from copy editing to
opinions about content: John McClements, Marilyn Genovese, JoWynn
Johns, Suzan Bobette, E E Ho, Dr. Dave Thom and Ronalene White. Joan
Buchman and Kristin Scherger contributed greatly to the development of
our program, first as students and for the last several years as
moderators of our groups. Lisa Lorden has offered support and wise
counsel. Lastly, a special thanks to Jan Wolski, Associate Director of
our program. I could hardly hope for a better collaborator.
Bruce Campbell, Ph.D.
Director, CFIDS/Fibromyalgia Self-Help Program
