July - August 1999
Support for changing our lifestyle
By JoWynn Johns
A Guide for Managing Your CFIDS
By Bruce Campbell, PhD, 1999
This is the
CFIDS Self-Help Course, which Bruce Campbell designed. More information about
the course and book are available at Bruce’s web site,
by E-mail at CFIDS_Self_Help@yahoo.com,
or by mail to Bruce Campbell, 777 San Antonio Road #121, Palo Alto, CA 94303.
While many of us believe living "inside the envelope" would help us reduce
we often find it difficult to do so. Finding the right combination of activity and rest can be a daunting
challenge. Where can we get the strength to resist the forces that push us outside our envelope, that
prevent us from even discovering what our envelope is?
Bruce Campbell, a PWC who
has had extensive professional experience with people who have other chronic illnesses and disability,
has developed the CFIDS Self-Help Course to address just this question. He wrote about his work with CFIDS
support groups in the November/December 1998 issue of the Chronicle. Since then, Bruce has expanded
his text into The CFIDS Helpbook: A Guide for Managing Your CFIDS. He has led several more groups
through the course, and he has introduced an E-mail version, which he pilot-tested this past winter.
CFIDS Self-Help Course provides the information and the structure needed to facilitate changing one's
habits and routines--something that is hard for all of us. Not a prescription for what to do, the course
is a process of discovering for ourselves what we uniquely need to change in our lifestyle. Just as Weight
Watchers and Alcoholics Anonymous provide the information and structure people need to change their eating
and drinking habits, this course provides what PWCs need to change our daily routines. It helps us find
a way of living that helps to reduce symptoms and possibly leads to significant recovery for some. While
some of us can do it on our own, many others find that mutual support is the necessary ingredient for
success in changing ourselves.
I was privileged to participate in the pilot e-mail group.
Six of us---Beth, Judy, Suzy, Murielle, Cathy, and I---joined Bruce in this on-line experiment. Every
other week, we read a few pages of text and responded to questions, topics for discussion, and assignments
on which we reported results. We sent our responses by E-mail to a list server that distributed the messages
to all members of the group. We also engaged in private, one-to-one exchanges, getting to know each other.
In this way, we became a support group, worrying about each other, sharing coping tips, encouraging, commiserating
and congratulating when appropriate. With a break for the December holidays, it took us about four months
to complete the course.
At the end, we all reported that we had benefited. We had learned
and experienced the value of planned, regular, "smart" rest and of pacing our activities. We'd seen how
we could use various ways of recording our experience so that we could see the results of our self-experiments.
And we'd had strong support for trying something that was difficult and uncomfortable: living within our
limits. As a result of this program, I, for example, have succeeded in establishing a daily rest schedule
that has enabled me to reduce the total time I had been spending in bed while having more "Good Days."
The course is now offered in several locations in the San Francisco Bay area and via E-mail
over the Internet. Also, the Helpbook is available separately for people who want to try this methodology.
Although the Helpbook itself is a great resource, its usefulness is enhanced by working through it with
a group or a friend.
JoWynn Johns, 61, has been disabled by CFIDS since January 1993.
Before she was
forced to stop working, she had developed an independent management consulting practice following 25 years
as a corporate executive.
Journal makes it easy to record your symptoms
$12.95 plus $3 shipping (available from the publisher, PO Box 23108, Eugene,
or 97402-0425, or 800/888-3392. Quantity discounts available.)
This personal health journal
is designed to help a patient with chronic illness keep track of medications,
vitamins, activity, pain, sleep, symptoms and meals. The checklist format will
help a patient keep a clear, easy-to-read record that could be invaluable in
reporting the effect of medications or of activity or diet to one’s doctor.
Frances Wilkins designed the journal after a specialist she was seeing thanked
her profusely for keeping such good records. She was so pleased at feeling she
had played an important role in her own healthcare that she designed an even
easier way to do it. The journal is spiral bound with enough pages for more than
three months of daily record keeping. It also includes pages to record medical
tests, purchases and other information.