Recovering from Chronic Fatigue Syndrome: 

A Guide to Self-Empowerment 

By William Collinge, Ph.D. 


Chapter 3. The Recovery Phase:  When and Why Recovery Happens
      "My road to recovery has been bumpy. Many times I've gone two steps forward and one step back. There was a lot of fear when I started feeling really good, because I thought `It's not going to last,' or `Gee, I'm feeling well, this isn't right.' My self-image was still that `I'm sick.' It took a long time to accept feeling good without fear of relapse.  
      "I consider myself recovered. But I'm not back where I was, I'm many steps further, because I'm a different person now. To go back to where I was would mean going backwards. I've grown and learned so much about myself that there's no way that I would want to go back. All of my attitudes and perceptions were out of whack, and I really needed to look into them.  
      "I'm in a whole different place in my life. I feel I can do everything I want to do, that my life is happier than it has ever been. I have a better idea of who I am, and I am more at peace."   -- Gail
      Until very recently, almost all the attention in dealing with the phenomenon of CFS has been on describing the syndrome and the search for causes. Very little attention has been given to describing the recovery process, or explaining why and how people recover. Now, as we gain more experience with people going into recovery, this subject is coming out of the closet. 
     Andrew Lloyd, Visiting Research Fellow at the Laboratory of Molecular Immunoregulation, National Cancer Institute, is one of the most articulate authorities on CFS research. Based on his observations of large scale research both in his native Australia and the United States, he affirms that recovery is indeed a realistic hope: 
     "Our overwhelming experience... has been that when recovery occurs, and we believe that it happens commonly, it is complete, and one can find no evidence, pathological or hematological, of any disorder whatsoever... Whatever the process is that produces this fatigue state appears to be completely reversible." 
     This perspective is reinforced by results of a study that followed the course of CFS in 135 patients in Minnesota. The study was directed by Phil Peterson, M.D., of the University of Minnesota Medical School and Hennepin County Medical Center in Minneapolis. 
     The results of that study led Peterson to conclude that "Although it waxes and wanes, (patients) generally head slowly out of the woods with this illness. Recovery is... clearly the rule in the majority of patients..." Peterson summarizes his perspective by stating that "This is not an interminable disability. Patients do recover gradually." 
     We have sufficient data and clinical experience by now to say that beyond the acute and chronic phases, there is a recovery phase to CFS. In the remainder of this chapter I will describe my observations and the findings of other researchers, on the recovery phase and the factors that influence it. 

THE RECOVERY PHASE 
     This phase can be characterized by 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 "turning the corner" in the overall pattern of symptoms. I have heard patients attribute this shift to a variety of factors. For some it was a certain medical treatment. For others the turning point was a major change in lifestyle 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. 
     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. 
     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 in the foreground of daily experience. As periods of remission lengthen, the person 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? This is an interesting question in light of our discussion in Chapter 1 about "recovery" involving a sense of living in balance and harmony. In order for symptoms to be reduced, there has to be a re-establishment of balance and harmony in the functioning of the immune cells. Since the symptoms are caused by the chemical by-products 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 the possibility of a relapse. "In remission" or "in recovery" are preferred, at least until a substantial period of time has passed with no symptoms. With cancer, for instance, a remission of symptoms for five years is generally considered a recovery. 
     With CFS, however, there is no consensus on when 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 occurring in the chronic phase. Relapses can even occur after one has recovered a satisfactory level of functioning and a basic sense of control and balance. Again, however, these relapses are likely to be relatively mild, and serve mainly as reminders of the lessons learned during the recovery process. 
     I do not go along with the twelve-step notion that once you are in a recovery process you will be "in recovery" for the rest of your life. Many former CFS patients have convinced me that recovery is a state that is attainable, and from which you can get on with your life. Sarah, who was 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 back in 1985. 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." 
     We are now able to think in terms of a three phase model for this disease. Keeping in mind that there are wide variations among individuals, the figure below represents a composite or a general pattern of progression I have seen based on my clinical obeservation and the trends in the research.

        As with cancer and AIDS (and there have been cases of HIV positive people convertig to HIV negative), recovery from CFS is sustained best in people who have made profound and significant changes in their lifestyle, diet, and self-care. The degree to which relapses are possible later in life is unknown. 

How Long to Recovery? 
     It would certainly be reassuring to have a fixed time frame for the course of CFS. This would give a sense of predictability to the experience, reducing some of the anxiety about the unknowns of it. Again, however, the tremendous variation among individuals must be taken into account. 
     The multi-causal perspective would remind us that recovery time is affected by many different factors. These include genetic factors, self-care and self-help, medical treatment, lifestyle change, ongoing stresses, and perhaps even the individual strains of the agent(s) triggering the syndrome, the numbers or intensity of exposures to disease triggering agents, and perhaps many other factors. There are three factors, however, which stand out in predicting time to recovery: initial severity of symptoms, medical treatment, and psychological adjustment to the diagnosis. 

Illness Severity and Recovery Time 
     While we are still accummulating data on this subject, evidence suggests that both the severity of your symptoms and how long you have had them may go a long way toward predicting recovery time. One of the more helpful treatments of this issue is offered by David Bell, M.D. Dr. Bell was the primary care physician in the Lyndonville, New York outbreak of CFS in the mid-1980's, and was a collaborator in the Wistar Institute study of the possible retrovirus involved in of CFS. He groups patients into three rough categories: 
       Group 1, mild to moderate symptoms, good prognosis for return to normal state without medical treatment. 
 Group 2, moderate symptoms, prolonged course (have been ill five years or longer), prominent neurological symptoms, and had a gradual onset of symptoms. These are less likely to experience remissions without medical treatment. 
     Group 3, severe symptoms, small chance of recovery without aggressive treatment. 
     Dr. Bell has offered a rating scale, based on activity level, to help in assessment of illness severity and in determining to which of the above three groups a patient might belong: 

0: Entirely healthy with 100% activity and no symptoms 
1: Increasing levels of symptoms 
2: 75% activity, not able to keep up with normal level of 
activity 
3: 50% reduction in activity with moderately severe symptoms (by definition, a diagnosis of CFS requires this for 6 months) 
4: More severe reduction, with more severe symptoms 
5: Severely ill, bedridden
     This scale is useful in helping relate the severity of illness with the course of CFS. In one study, Dr. Bell followed a group of eighteen children in the Lyndonville outbreak. The average age at onset of symptoms was 11 years. Bell reports that most of the children had reached Stage 4 or 5 on the severity scale, but most of these had returned to at least Stage 2 within three years from onset. Only a few were still in Stage 3 at the three-year mark. Interestingly, however, while all the children showed gradual improvement over the four years of the study, and most had reached Stages 1 or 2, none considered themselves completely free of the disease process., 
     In another study, Carol Jessop, M.D., an internist and associate professor at the University of California-San Francisco, used Bell's five point scale to evaluate the course of 1,324 adult CFS patients between 1983 and 1990. Seventy-five percent of her sample were women, averaging 39.6 years of age. 
     This is the largest sample studied to date. Her findings were as follows: 
     84% had recovered to Stage 0, 1 or 2, working thirty to forty hours per week. 
     30% recovered to stage 0, considered fully recovered, which Jessop defines as eighteen months free of symptoms. 
     For those 30%, the average length of time to reach stage 0 was twenty-nine months. 
     44% of the "recovered" patients still experienced some recurrence of symptoms with pre-menstrual stress, surgery, or other infections. 
     While these two studies dealt with very different patient samples, there is a consensus that the course of CFS is similar for children and adults. There are some generalizations we may make. One is that there is a tendency for improvement over time for most patients, although it is likely to be slower in more severe cases. The other is that even with substantial improvement, there can remain some vulnerability to symptoms, although their severity may diminish over time. 
     Generalizations about the course of CFS are helpful for getting a realistic perspective on what you are up against. However, the usefulness of statistics is limited when we start considering the unique individual. Obviously, statistics are based on averages of many people, and may or may not fit your personal experience. 

Medical Treatment and Recovery Time 
     Because research in medical treatment of CFS is in its infancy, we do not yet have data to say precisely how much particular medicines speed recovery. As Bell states, "There is a huge spectrum of disease severity in CFS, and many patients with this condition may improve to a normal functional state even without treatment." Still, there is no doubt that many people with severe illness have been helped immeasurably by some of these treatments. 
     There are no proven "cures" so to speak. Most current treatments focus on symptoms, with varying degrees of success. It is beyond the scope of this book to discuss or recommend specific medical treatments. An excellent summary of current medical treatments is provided on the CFIDS Assocation of America web site. 
     The types of medical treatment can be divided into four categories which are broadly outlined below. 
     The first are those intended to relieve symptoms. At this writing there is no acknowledged treatment for the most common of the symptoms, fatigue. Other symptoms do have effective treatments. While initially we may think of treating symptoms as only palliative, its importance to recovery should not be underestimated. 
     For example, the single most important symptom to treat is the sleep disturbance. If this is treated effectively, getting good quality rest will definitely speed the recovery process. Drugs such as tricyclic antidepressants, given in doses much smaller than would be used to treat depression itself, have been successful in treating the sleep disturbance. 
     The pain of myalgias and arthralgias has been successfully treated with nonsteroidal anti-inflammatory drugs. Here again, to the degree that such pain impairs good quality rest, such treatment can contribute indirectly to recovery. 
     A second type of treatment are those intended to directly intervene in the disease process. These are mainly experimental drugs at this time, and include immune-modulators like Ampligen, whose purpose is to calm down and rebalance the immune responses. Ampligen also has antiviral properties, as do gammaglobulin and Acyclovir. As more is learned about the nature of CFS and how to heal the immune system, it is likely that direct interventions like these will become more available. 
     Third are those treatments which deal with related conditions. Problems such as yeast overgrowth, intestinal parasites, and Hashimoto's thyroiditis are not uncommon in people with CFS, and can themselves contribute to chronic immune activation. Some physicians report radical improvement for patients who show evidence of these conditions. Dr. Jessop reports patients' cognitive disturbances have improved with such treatment. 
     The detection of yeast overgrowth and parasites requires the testing of both a swab sample from the rectal mucosa, and a purged stool sample. The latter is necessary because, as I can tell you from personal experience, the two types of samples can give very different results. Fortunately we have effective treatments for yeast overgrowth and parasites. Testing for Hashimoto's thyroiditis requires both a thyroid function test and a thyroid antibody test. There is also effective treatment for this condition. 
     Fourth are treatments intended to strengthen the overall host resistance of the person. These include homeopathy, acupuncture and Chinese herbs. These methods are based on their theoretical effects for enhancing and harmonizing all the body systems. This is in contrast to the other treatments which target a specific system, symptom, or pathogen. 

Psychological Factors and Recovery Time 
     What role do psychological factors play in the progression to recovery? And in sustaining recovery? Can you accelerate your movement into and through the recovery phase? CFS is clearly not a psychological illness, and anyone who thinks so is sadly misinformed. Yet, it can be argued that psychological factors have the greatest impact on recovery. This is because compliance with medical treatment, lifestyle change, and self-help all originate with attitude and behavior change. 
     For many people the recovery phase begins with a shift of attitude in which they decide to take an active stance toward health. This often entails a radical re-evaluation of lifestyle and priorities. Typical changes have involved shifting from putting others first to acknowledging and asserting one's own needs; clearing up communication or festering conflict in relationships; altering nutritional patterns; quitting or cutting back on working hours; and setting aside time each day for self-help practices. 
     Often there are emotional or relationship obstacles to such changes which must be resolved. Linda, for example, reported, "The criterion I used to get healthy was: `Whatever or whoever gives me energy, do that or be with that person. And whoever drained me, avoid them.' I absolutely had to avoid my ex-husband. I could see very clearly that ours was a toxic relationship, and that I could not be healthy and have him in my life." 
     Many of the principles used in coping with other illnesses apply directly to CFS. The cancer self-help movement and psychological research with cancer have given rise to the concept of the "exceptional cancer patient." This is the person who actively attempts to defy the statistics or the prognosis. 
     In my experience, there are exceptional CFS patients as well. They take an active role in promoting their own recovery through self-help and lifestyle change. Rather than taking the attitude that their recovery depends on medical treatment alone, they become active partners with their physicians and do what they can on their own to promote healing. As with cancer, AIDS, and other serious illnesses, the course of CFS is affected to a great degree by the coping responses of the individual. 
     Clearly CFS affects the mind and spirit. We already know that the disease process causes lesions in the brain tissue, leading to cognitive dysfunctions of various kinds. However, the mind and spirit also influence the physical disease process. This takes place in a couple of ways. First, the emotional distress the may come simply as a result of having a chronic illness may actually be a further burden for the body. In a sense, it is like being depressed, and then being depressed about your depression. 
     Second, your attitudes and emotional state determine whether your embrace the recommended behavior and lifestyle changes, which themselves will then help lay the groundwork for your recovery. 
 One of my patients, Sarah, states: "I believe that the gammaglobulin treatment had something to do with my recovery. But I also believe that the best drugs in the world would not have worked if I'd had a pessimistic attitude. I had to believe I could can get better, or that I could cope with what I had." 
     This perspective is reinforced by another patient, Debbie, who says, "I am convinced that the medical treatment would have not been sufficient without me changing my emotional outlook." 

MAKING RECOVERY LAST 
     As I have already stated, a classic mistake people with CFS often make is to think recovery means "returning to how I was living before I got sick." The person will seek to recreate the conditions in which illness initially developed, and will of course relapse. Many are presented with this lesson repeatedly, until they shift their criteria for what "recovery" means. It is not desirable to return to "how it was before." 
     The message of CFS is change. In this context, there is no turning back the clock. There is only growth, renewed sensitivity to oneself, and vigilance toward maintaining balance in living. This entails a new appreciation of the quality of life, as opposed to mere quantity. While the person may have been able to run five miles a day before developing CFS, he may now jog two miles and savor every step, stopping without being exhausted, and appreciating the exhilaration it brings. 
     What is recovered is a sense of balance and control over that balance. With time he may feel able to add to the number of miles, but his orientation is now toward living in balance, rather than challenging limits. 
     In a practical sense, this means making conscious choices each day to pace yourself, moderate your behavior, and anticipate your vulnerability. Those who practice this kind of vigilance have shown the best success in sustaining recovery. For example, Tina, a management consultant, tells us: 
     "I can tell when I'm vulnerable because I get a mildly sore throat. I recognize it and I nip it in the bud before it can get established. The shift for me has been in admitting something is going on rather than being angry or denying it. 
     "Then I take steps to prevent relapse. If there is any stress going on, I just get myself out of it. I start taking better care of myself, get extra rest, and I can usually just skip past it. I rarely end up in bed anymore, but may just have a very mild relapse..." 

THE BALANCING ACT 
     Most of us can tolerate adversity much more easily if we know it is going to pass in a predictable way, and can look forward with reasonable certainty to a time when it will be behind us. Since this is difficult with CFS, there are a variety of responses possible for coping with this uncertainty. 
     One is to engage in a determined quest for answers. There is, however, a risk that getting lost in this quest can be overwhelming. Attempting to stay on top of all the latest research developments, the latest scientific conferences, and the latest news stories in the media can become very time consuming and stressful, further exacerbating symptoms. If one is not careful, it can reinforce a belief that one's deliverance from the syndrome is entirely dependent on resources outside oneself. 
     The opposite extreme, to give in to a sense of helplessness or impotence, is also detrimental. This too can add unnecessary stress to the experience of CFS. And it also reflects a belief that forces outside one's control offer the only hope for relief or help. 
     A third path is to balance the quest for external support with the development of internal support. When and if medical breakthroughs occur, this is good. In the meantime the centerpiece of your healing program must be self-empowerment. 


Audio CD Program Available
Recovering from CFS:
The Home Self-Empowerment Program

For information about Dr. Collinge's four-CD audio program of inspirational talks and guided self-healing exercises that accompany this book, click here.