Self-Help as a Treatment for CFS
By Bruce Campbell
Note: This article is adapted from the website Recovery from Chronic Fatigue Syndrome: One Person's Story. Bruce Campbell is the founder of the ME/CFS and Fibromyalgia Self-Help program.
When I was diagnosed with CFS in 1997, I functioned at about 25% of my pre-illness level. Over a period of several years, I gradually returned to a normal life and consider myself to be recovered.
I have an activity level comparable to that of other people of my age and no longer experience CFS symptoms, except very mildly on occasion. My improvement was gradual but steady, about one or two percent a month until I got back to 90%, with further improvement since.
The path I followed was an unconventional one. After reading about my illness, I concluded that medical resources for CFS patients were very limited. It was clear that there was no medical cure for the illness, and the likelihood that effective treatments would be developed in the near future seemed dim, because very little money was being put into research.
It was also discouraging to read that there was no standard treatment, that is, no commonly prescribed medication given routinely to CFS patients. What one person found helpful might be ineffective with another. It seemed that the best course the medical world had to offer was a series of experiments with different medications in the hope of finding one or more that would reduce symptoms only modestly.
Since I wanted to get my old life back, I decided to forego that approach. Rather than experimenting with many treatments in the hope of achieving minor symptom improvement, I decided my best chance for getting better was to observe myself and make changes in the way I lived. In contrast to an approach with a very uncertain outcome, I felt confident I could find things that would help me improve.
Acceptance and Hope
My approach combined two factors that might seem incompatible at first glance: acceptance and hope. By acceptance, I mean that I acknowledged that my life had changed for an extended period of time and perhaps permanently.
Rather than a temporary interruption, CFS had become the central fact around which my life revolved. Its effects were comprehensive, limiting my energy level and my ability to work, changing my emotions and relationships, and creating great uncertainty. I accepted that my focus would have to be on adapting to those limits.
Acceptance, however, did not mean resignation. Instead, it meant for me a recognition that CFS forced me to lead a different and more limited life, perhaps for the rest of my life.
I believed that listening to my body and responding to its needs gave me the best chance for improvement, but I also recognized the limits of my power. I thought I could exercise some control over my symptoms, but believed that the extent of improvement was out of my hands.
At the same time I had hope. I was confident that through changing my daily habits and routines I could find things to help me feel better. I did not know whether it was possible to recover, but I believed that I could reduce my discomfort, reduce uncertainty and regain some control over my life. I did not expect a quick solution. Rather I recognized that self-management was a way of life. I believed that listening to my body and responding to its needs gave me the best chance for improvement.
Experimentation
My path was one of trail and error. At the beginning, I didn't know my limits or what would help. Everything I did felt like an experiment. Some things I tried helped me, but others didn't. But I believed that whatever the outcome, I could learn from my experience.
Often I learned more from the experiments that turned out differently than I hoped. I assumed that this approach would require discipline and patience, and that I would often fail. But I felt confident that I could improve my skills over time and that, in any case, there was no better alternative than experimentation.
Keeping records, which took only a few minutes a day, helped me to recognize connections between my actions and my symptoms, thus making my experiments more efficient. Once I understood my limits, my records helped me live more consistently within them by documenting the price I paid when I lived outside my "energy envelope."
Multiple Strategies
I also recognized that my approach had to address the complexity of my illness. Not only did I have several symptoms, those symptoms each had multiple causes. Also, my illness affected, and was affected by, many other parts of my life.
For example, my illness created more stress, and stressful situations worsened my symptoms. Becoming aware of these interactions showed me that I would have to think comprehensively about my life and use many strategies.
Perhaps the key strategy was pacing. After living for several months on a roller coaster of intense symptoms followed by period of rest, I came to believe that defining my limits in detail and living consistently with them offered the best chance of controlling my symptoms and improving my quality of life. This meant finding a sustainable level of activity and making appropriate use of rest on a daily basis.
Controlling stress was also crucial. Because my illness both increased the stress in my life and magnified the effects of stress, I made managing stress a major focus. I used relaxation and other techniques to reduce stress and also learned how to control stress by avoiding stressful situations.
Finally, two other factors were important: emotions and relationships. Being ill triggered powerful feelings: anxiety, frustration, depression and grief. Perhaps the most powerful was grief, which meant coming to terms with loss and finding a way to bring new meaning to my life when so much had been taken away.
Also, I found that support, especially the support offered by fellow patients, was crucial to living well with illness.
Conclusion
In telling my story, I am not promising recovery to others. Having known a thousand or more CFS patients, only a few of whom recovered, I recognize how lucky I am. Also, I do not advocate that other patients forego medical treatment of CFS.
Medications can be helpful for many patients with CFS and many patients have additional problems best addressed through a medical approach. I hope, however, that you find encouragement in my story, which I believe suggests that there is much patients can do to help themselves when faced with a major health challenge, things are are safe, inexpensive and have a high likelihood of helping.
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