From the recently released book: Recovering from Chronic Fatigue Syndrome: A Guide to Self-Empowerment (Putnam/Perigee, 1993)
While CFS researchers seek to describe the disease process and find a medical cure, little attention has been given to describing the recovery process that has occurred in many people. Yet we now have sufficient clinical experience to show that there is a recovery phase to CFS. Following are some observations about the recovery phase.
This phase can be characterized as a gradual upward ascent toward health, punctuated by relapses and remissions of varying degrees. While there are still these cycles, the relapses generally become less severe, of less duration, and the time between relapses lengthens.
People in the recovery phase can often point to a time when there seemed to be a positive shift or a variety of factors. For some it was a certain form of medical support. For others it was a major change in life-style such as dramatically reducing work hours, quitting a stressful job, or ending a dysfunctional relationship.
Still others point to a change in their relationship with themselves, a turning inward and involvement in self-help. And in some cases there is no apparent trigger of recovery, but rather the body’s healing efforts finally seem to gain the upper hand on their own.
During the recovery phase the person learns how to carefully observe the body’s signals, and to monitor its vulnerability, which is cyclical. They learn to modulate the expenditure of energy, to anticipate vulnerability, and to balance activity with rest.
…in some cases there is no apparent trigger of recovery, but rather the body’s healing efforts that finally seem to gain the upper hand on their own.
Close attention is paid to diet and stress. Many people develop a more introspective attitude toward life, with a greater appreciation for emotional honesty. Promotion of health remains attentive to the body’s needs and avoids the tendency to overdo. The importance of this is reinforced by occasional relapses when vigilance wanes. Gradually the person establishes a new balance of rest and activity, with a heightened sensitivity to, and respect for, the body. Vulnerability appears to diminish with time, as long as a vigilant attitude is maintained.
What happens at the cellular level during the recovery phase? Since the symptoms are caused by the chemical byproducts of an imbalanced immune response, when your symptoms diminish or disappear this is evidence that your immune system is re-establishing its own healthy balance.
When does the recovery phase end? When are you “recovered”? With some illnesses, the use of the word “recovered” is avoided, for fear of possible relapse. “In remission” or “in recovery” are preferred, at least until a substantial period of time has passed with no symptoms. With cancer, a remission for five years is generally considered a recovery.
With CFS, there is no consensus on a person is called “recovered.” This is complicated by the cyclical nature of CFS. Relapses do occur during the recovery phase, though they may be relatively minor and short-lived compared to the debilitation of the chronic phase. Relapses can even occur after one has fully regained a satisfactory level of functioning and a basic sense of control balance. Again, however, these relapses are likely to be relatively mild, and serve mainly as reminders of the lessons learned during the recovery process.
Many former PWCs have proven that recovery is attainable, and you can get on with your life. Sarah, one of the more severe cases I have worked with, tells us: “I consider myself fully recovered. I am able to perform all the functions that I was able to do… My thinking is clear and my energy level is very high. I keep on top of things now by not over-doing, and this may be the key for me: I’m no longer interested in testing my limits.”
As with cancer and AIDS, recovery from CFS is sustained best in people who have made profound and significant changes in their life-style, diet, and self-care.
Editor’s Note: This excellent book provides the most current insights into the recovery process and how to promote it. It can be ordered through The CFIDS Association of America Inc., PO Box 220398, Charlotte, NC 28222-0398, 800/442-3437. A set of accompanying tapes, “The Home Self-Empowerment Program,” is also available from Dr. Collinge at 800/745-1837.