Recovering from Chronic Fatigue Syndrome:
A Guide to Self-Empowerment

By William Collinge, Ph.D.

Table of Contents


PART I. THE NATURE AND COURSE OF CFS

Chapter 1. From Illness to Insight:
Understanding CFS

     "I appreciate life more than I have ever appreciated it before. I believe that CFS has left me, although I understand that I'm still vulnerable, so when I get tired I get a little fear... I see life as a blessing now, and I don't take it for granted. I have more faith in myself, having made it through the worst year of my whole life.
      "I thought about suicide. I didn't try it, but it was very attractive to me. Death would have been welcomed. I questioned how I was going to provide for myself.
      "I believe I have more energy than before, but I'm more centered, more within myself and less concerned about my outer world. My energy has a different quality."  - Linda
     Perhaps you are reading these words because you or someone you know has Chronic Fatigue Syndrome (CFS), also known as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) or Myalgic Encephalomyelitis (ME). If this is the case, there is a fact you need to embrace right now, even though you may find it difficult to believe: Recovery is possible. I emphasize this at the outset because so often people with CFS lack belief in the possibility of healing. Rarely have they met a person like Linda who can look back on CFS. 
     Why might the notion of recovery come as a surprise? It may be because of the syndrome's effects on one's morale and ability to envision a better future. Or it may be due to the social isolation that often comes with this syndrome. Perhaps it results from the media's sensational images of debilitation and hopelessness. Or it may be that a few support groups have inadvertently reinforced the image of "CFS victim." Or perhaps the syndrome simply has not been observed over a long enough period to shed much light on life after CFS.
     This book is an outcome of the first complementary therapy program designed specifically for CFS. The term "complementary" refers to any approach that works along side and supports established medical treatment. The program originated at Incline Village, Nevada, on the north shore of Lake Tahoe, as a result of the widely publicized outbreak of the mid-1980's. Our purpose was to help patients empower themselves to be full participants in their recovery.
     With the cooperation of Daniel Peterson, M.D., co-discoverer of the outbreak, the program was based on a synthesis of research in behavioral medicine and CFS. This included insights gained from my work with exceptional cancer and AIDS patients -- long-term survivors and those with unexpected recoveries. As with those other illnesses, profound lifestyle change, introspection, and self-help strategies are integral to recovery from CFS. There are of course features unique to this syndrome, and the program was tailored accordingly.
     Our initial participants were referred by Dr. Peterson to complement his medical treatment. It soon became apparent that those who participated in this approach had better outcomes than those who relied on medical treatment alone. At this writing the program has served patients from fourteen states, and their family members. Patients have often cited this work as the turning point in their recovery.
     In these pages you will learn the principles and strategies used by former CFS patients to heal physically, emotionally, and spiritually. You will hear in their own words what the healing process has been like for them. As a full, active participant in your treatment, you too will rediscover your health.
     A note about labels: Another way of referring to a person with this syndrome is "PWC," for "Person with CFIDS." This term arose out of the need to affirm the authenticity of the syndrome, and to give patients a sense of shared identity. While I appreciate both of these concerns, I still prefer the less-than-perfect term "CFS patient" because it suggests the transitory nature of CFS, whereas "PWC" may inadvertently suggest an enduring identity. I agree that calling oneself a PWC may be helpful, especially in the early stages of coping with the syndrome, my broader interest is in helping people dis-identify with the syndrome as a definition of who they are. 

WHAT IS CFS?
     It is not uncommon for people to have seen over two dozen doctors before getting this diagnosis. While this problem is diminishing, it exists because CFS is the name for a syndrome, a "bag of symptoms," rather than for a cause. By contrast, strep throat, for example, is named for its known cause -- the streptococcus bacterium -- rather that its symptoms.
     Because there is so much ambiguity surrounding this syndrome, many people with CFS have run a gauntlet of different diagnoses. Some of the most difficult to accept were those of depression or psychosomatic disorders, which seemed to blame the patient. Even worse for many was being given no diagnosis. In retrospect, these were treated most honestly, at least not having been mislabeled.
     For anyone who has followed the research of the neurologic and immunologic abnormalities of this syndrome, there is no longer any question that it exists. However, there is naturally a period of lag time between when a new syndrome is identified and when the medical community at large integrates this new information. 
     Fortunately the medical literature is acknowledging the existence of this syndrome and health care providers are becoming informed about it. If your doctor seems uninformed or uninterested, you can get a list of recommended doctors in your area by contacting the CFIDS Association (see Appendix C).

The Challenge of Making the Diagnosis
     Diagnosis of CFS is complicated by the fact that fatigue is the single most commonly reported complaint in physicians' offices. It is a feature of countless other conditions. Hence there is a need to rule out other illnesses, many of which have more concrete diagnostic criteria and well-defined treatments.
     Figure 1 below helps put the problem of fatigue into perspective. The largest circle represents the general complaint of fatigue as a symptom for a wide range of conditions. The next smaller circle encompasses chronic fatigue -- fatigue on a more enduring basis, but which could still be the result of a range of conditions. The smallest circle represents the distinct condition known as CFS or CFIDS, which includes a unique grouping of symptoms including brain and immune system irregularities.


Figure 1. The Diagnosis of "Chronic Fatigue Syndrome" in Relation to Other Kinds of Fatigue Complaints

According to the Centers for Disease Control (CDC), the major criteria for a diagnosis of CFS include: 
     (1) New onset of persistent or relapsing, debilitating fatigue or easy fatigability in a person who has no previous history of similar symptoms, that does not resolve with bed rest, and that is severe enough to reduce or impair average daily activity below 50% of the patient's premorbid (before illness) activity level for a period of at least six months.
     (2) Other clinical conditions that may produce similar symptoms must be excluded by thorough evaluation, based on history, physical examination, and appropriate laboratory findings.
     It is not the purpose of this book to focus on the nuances of diagnosis or medical treatment. These should be addressed through direct consultation with competent medical help. The interested reader is referred to Appendix A for more detail about the CDC diagnostic criteria, and Appendix B for a summary of known medical treatments. It is my purpose to offer a practical, realistic perspective on the syndrome once diagnosed, and on how to fully participate in your recovery. Toward this end, let us consider what CFS really is. 

A Definition
     There have been countless attempts to characterize this syndrome, usually with long, cumbersome lists of symptoms, but great progress has been made in refining our understanding. One of the most concise descriptions is offered by Jay Goldstein, M.D., Director of the Chronic Fatigue Institute in Beverly Hills, CA who states: "There is an increasing consensus that CFS is a virally induced, cytokine-mediated psychoneuroimmunologic disorder that occurs in genetically predisposed individuals."
     This brief yet thorough definition is tremendously significant. If you can understand each of its parts, you will understand much about not only CFS, but the predominant health crises of this decade including cancer, environmental illness, AIDS, and even heart disease. Before we examine the parts of this explanation more closely, let us first step back to view it in a broader context.

THE MULTICAUSAL PERSPECTIVE
     The significance of Goldstein's statement is that it embodies the "multicausal perspective." This represents an historic shift in how the medical world thinks about what determines health and illness. The shift is from a single-cause approach to a multicausal approach.
     In the multicausal perspective, health status is the outcome of several factors working together, not a single factor such as a virus. These factors include heredity, environment, lifestyle, and medical treatment (see illustration below). They operate together to determine your resistance to illness, as well as the timing and severity of illness. Let us look more closely at each of these factors before we return to the description of CFS.


Heredity
     We take for granted that our height and hair color are genetically determined, yet there are also genetic differences in how our immune systems function. This makes one person more vulnerable to certain types of cancer, another to certain types of viruses, and leaves a third perhaps more vulnerable to autoimmune diseases like multiple sclerosis or rheumatoid arthritis. A fourth person may be effectively resistant to all these immune-related diseases, yet may succumb to a disease process in another system, such as heart disease. This helps explain how a genetically determined vulnerability may be a factor in CFS.

Environment
     Obviously pathogens such as viruses and bacteria come from the environment around you. But the influence of the environment on your health also includes toxins and pollutants that have accumulated in your body and may affect your resistance to illness. For example, growing up downwind from a nuclear testing site in the 1950's or in a farming community where agricultural chemicals had seeped into the water table, can have a definite impact on your resistance. And of course there are the petrochemicals and other substances in your current environment, some of which we have yet to discover, which may chronically disturb your immune functioning.

Medical Treatment
     Various kinds of medical treatment that you have received over your lifetimes can support your immune system while others may actually weaken it. For instance, there is evidence that antibiotics, though having saved countless lives, may actually weaken immunity under some circumstances. This is especially true in people who have had many courses of antibiotics or taken them for a long period of time. The effects may be direct, via the chemicals affecting white cell functioning. Or they may be indirect, by altering the intestinal flora in a way that fosters yeast overgrowth, with the toxic by-products of yeast activity weakening immunity.
     Also there is an interesting debate over whether immunizations may interfere with normal immunity. Most of us growing up in the second half of this century have had heavy doses of antibiotics and various immunizations. Many other drugs we commonly take have not been around long enough to truly reveal their long term effects.

Lifestyle
     Lifestyle includes your patterns of rest and exercise, work and play habits, nutrition, loving relationships, emotional stress, self-help practices, and your attitudes toward living. All these factors have impact on the body's ability to resist illness. In the case of an illness such as CFS where there is no proven medical cure, this aspect of the multicausal perspective takes on even greater significance. 
     While there's not much you can do about your heredity, your past environment or past medical treatments, you can live a health-promoting lifestyle now. For example, you can avoid the standard American diet -- high fat, high sugar, low fiber, processed foods (known as "the S.A.D.") to eat a healthy, whole foods diet. You can alter your habits of work, play, and how you relate to others to reduce stress and have a greater balance of relaxation and exercise. And you can become an active participant in your health through self-empowerment strategies. Lifestyle is the area over which you have the greatest control on a daily basis in recovering from CFS.
     Lifestyle is also of great interest because of findings in the field of psychoneuroimmunology (PNI). This area of research explains how the brain and immune system communicate with each other, via the nervous system and chemical messengers in the blood. The relevance of this for lifestyle is that the mental, emotional, and spiritual aspects of your life can have impact, both positively and negatively, on your immune functioning.
     However, while PNI helps us see how the mind can help or harm our immune responses, it also shows us why recovery from CFS is not simply a question of "mind over matter." With this illness, matter--or the disease process in the physical body--affects mind as well. As we shall see later, the symptoms of CFS, including such cognitive problems as memory loss, anxiety, depression, and difficulty concentrating, are probably caused by the chemical by-products of the disease process.

Putting it All together
     With this background, let us now consider the evidence for each part of Goldstein's description of CFS.

Virally-Induced
     A virus is an environmental input which may serve as a trigger for the syndrome. It is not yet known whether we are dealing with a single virus or more than one. For a time it was thought that human herpesvirus number 6 (HHV6), discovered in 1987, might be the culprit. HHV6 infiltrates the T- and B-cells of the immune system, compromising their ability to protect the body from other viral infections. It also attacks certain neurological and intestinal tissue, and so is implicated in a great deal of the symptomatology., 
     Recent thinking, however, is that HHV6 is probably not acting alone in CFS. More likely, this very common virus is reactivated from its normally latent state by immunologic dysfunction that is caused by yet another agent, possibly another virus. The theory is that this, along with other latent viruses such as Epstein Barr and Cytomegalovirus, become active and create their typical symptoms because the immune system has become unable to keep them in their normal latent state. 
     This theory is supported by one of the most comprehensive studies of CFS, which was published in the prestigious journal Annals of Internal Medicine in January, 1992. It was based on a study of 259 patients from the practice of Daniel Peterson, M.D. and his then-partner Paul Cheney, M.D. in Incline Village, Nevada in the mid-1980's (hereafter called "the Tahoe study"). Two thirds of the patients were female, the average age was 38+ years, around 40% were college graduates, and the median length of illness at the time had reached 1.3 years. 
     The study compared these patients with a healthy control group. It gives us one of the clearest pictures yet of the neurologic and immunologic aspects of CFS. Some of the findings included:
     1. A significantly elevated T-cell ratio (3.16 versus 2.3 for the healthy comparison group). This is the ratio of T-helper to T-suppressor cells in the immune system. These cells and their ratios will be discussed more in Chapter 4, but this finding indicates that the immune system is trying hard to respond to something.
     2. Significantly more activity of the HHV6 virus. Active replication of the virus was found in 79% of the patients, and only 20% of the controls.
     3. Lesions in the brain tissue, as revealed by magnetic resonance imaging (MRI), were found in 78% of patients compared to 21% of the controls. 
     The strong implication is that the patients were experiencing a chronic, immunologically-meditated inflammatory process of the central nervous system. The heightened activity of HHV6, ordinarily a latent herpesvirus in healthy people, may explain a great deal of the symptoms since HHV6 is attracted to certain immunological, neurological, and intestinal cells. 
     A Retrovirus Connection? Researchers working independently on both coasts have recently discovered evidence of a new virus which shows strong evidence as a possible trigger for CFS. It is a previously unknown member of the class of viruses known as "retroviruses." A retrovirus is a type of virus that does not follow the usual disease pattern of other viruses. 
     First it attaches itself to a cell wall, then it penetrates the cell. Once inside, it sheds its outer coat. Then the RNA (genetic material) that was inside the retrovirus turns itself into DNA (another form of genetic material), and incorporates itself into the genetic material--the chromosome--of the human cell. In other words, the retrovirus infiltrates the genetic material of the human cell and commandeers its machinery, using it to make copies of the retrovirus RNA. These copies go out of the cell and become separate retroviral particles that can infect other cells. 
     In 1990 a team of researchers at the Wistar Institute in Philadelphia discovered evidence of a retrovirus in 80% of a sample of 30 CFS patients, both adults and children. Similar evidence of exposure was present in a third of twenty healthy people exposed to the patients. However, no evidence of the retrovirus was found in twenty healthy, unrelated people. 
     These findings suggest the possibility that a retrovirus may be involved in causation of CFS. If this is the case, it may act by integrating itself into the genetic material of immune cells and then alter immune functioning, thereby causing dysregulation or chronic activation of immune responses.,
     At the University of Southern California, John Martin, M.D., Ph.D., a prominent CFS researcher, has cultured a retrovirus from the blood and cerebrospinal fluid of several CFS patients. The particular virus he isolated is called a "foamy" virus, and belongs to a subclass of retroviruses called "spumaviruses." This type of virus has been largely unknown or unrecognized in humans, but has been known to infect animals. Interestingly, many animals carry this type of virus yet remain perfectly healthy. Dr. Martin believes this spumavirus may be a trigger for CFS by disturbing immune cell functioning.,
     According to Dr. Elaine DeFreitas of the Wistar Institute research team, the theory of a retrovirus as a causal factor is complicated by the fact that retroviruses are thought to be transmitted only by vital bodily fluids, and the risky behavior necessary for this does not fit the typical CFS patient. If this retrovirus is the long-sought trigger, understanding how it is transmitted will be a crucial question.

Cytokine-Mediated
     Cytokines are special hormones which the immune cells produce in their attempts to protect the body from infection. Symptoms of CFS may result from a chronic overproduction of cytokines. In effect, the immune system is stuck in the "full on" position, and its ability to "down-regulate" is impaired. Tremendously high levels of certain cytokines--specifically interleukin II (IL2) and interferon--have been found in CFS patients. These substances are used in cancer therapy to fight tumors, and as a side effect, routinely produce the symptoms of CFS in cancer patients. Of course the symptoms abate when treatment is ended.

Psychoneuroimmunologic Disorder 
     Mind, brain, nervous system, and immune system all affect, and are affected by, this disease process. It follows that the flow of communication among these systems may also be altered. In fact, many authorities assert that the involvement of CFS in the brain tissue and cognitive functioning are the most important and debilitating features of the syndrome. 

Genetically-Predisposed Individuals
     Some of us are more vulnerable than others to this condition, based on hereditary differences in how our immune systems respond to the viruses or other pathogens involved. 
     One of the most important insights about genetic influences is offered by AIDS research. H.I.V., a retrovirus, is the most studied virus in history, and more is known about the immune response in AIDS than in any other viral illness. A research team led by Mary Claire King at the University of California, Berkeley recently discovered a genetic pattern in people with H.I.V. that may account for reduced susceptibility to AIDS. As a result of these findings, a great deal of the tremendous individual variation in how the disease progresses can be explained. Most likely this applies to other viral diseases too, and it is consistent with theories of CFS which include a genetic predisposition to the syndrome.
     In summary, CFS affects the whole person. It is not a simple communicable disease, attributable to a single cause. Rather it is a result of multiple factors coming together. According to Dr. Seymour Grufferman, Chairman of Epidemiology and Preventive Medicine at the University of Pittsburgh, "It is likely that chronic fatigue syndrome has many etiologies and is a common outcome of several pathogenic pathways... The occurrence of a disease in clusters suggests that infectious agents or other common source environmental agents play a role in the etiology of the disease."

CFS AS AN OPPORTUNISTIC ILLNESS
     When we consider the multiple influences on our health, it is clear that there are many factors which affect our resistance. And when a state of compromise or weakened resistance is present, this makes it easier for a pathogen, such as a virus, to gain a foothold and trigger a disease process. An illness that arises out of such a state of vulnerability is called an "opportunistic" illness. 
     Perhaps the simplest example of an opportunistic illness is the common cold. We have all had experiences where we developed a cold after some specific stressful experience, such as travel to another climate, a period of emotional upset, final exams, or racing for a deadline. While cold viruses are constantly around us, it is only under certain circumstances that they find the opportunity to get a foothold. 
     The notion of opportunistic illness applies to other illnesses too. For instance, it is well known that all of us have cancer cells in our bodies, but few of us develop cancer. Most adults carry the Epstein-Barr virus (the cause of mononucleosis), but not all have had mononucleosis. And studies indicate that not everyone who is HIV-positive develops AIDS. In fact, a few have even converted back to HIV-negative.,
     Research with CFS strongly indicates that this too is an opportunistic illness. The presence of its causal agent(s) is necessary but not sufficient to cause CFS. That is, not everyone who is exposed to the agent(s) develops CFS. This is evidenced by the fact that few spouses of people with CFS, presumably having also been exposed, develop the condition. At this time we do not know whether there are any particular factors that might predispose someone to developing CFS. 
     If and when a specific viral trigger for CFS is confirmed, it is likely that it will also be found in other people who do not develop the disease. In keeping with the principle of multi-causality, it too will probably be considered necessary but not sufficient for the illness.

HOST RESISTANCE
     In order for pathogens such as viruses to flourish, they need a receptive host. This means a person whose resistance to those pathogens has already been compromised. And when these pathogens do not flourish, it is because host resistance has successfully kept them in check. In the case of CFS, the immune system is at the heart of host resistance.
     The concept of host resistance was the bone of contention in the celebrated struggle between two famous French researchers during the nineteenth century. Claude Bernard asserted that the "terrain," or the environment within the individual, is what allows disease to develop, and should receive the highest priority in research. For example, if you take a worm out of the moist earth and isolate it on a rock in the sun, it will die. The worm requires a very specific terrain in order to flourish.
     Louis Pasteur, Bernard's contemporary, argued vehemently that the presence of individual pathogens -- germs -- was more important in determining health, and they should be the focus of research. This bitter rivalry continued for years. However, on his deathbed, Pasteur recanted and made his famous statement that "The pathogen is nothing, the terrain is everything." 
     However, because CFS is an opportunistic illness relying on weakened host resistance, and because host resistance is very much affected by the behavior of the individual, there is a lot you can do to influence the course of your illness. Self-help and lifestyle change are means by which you can alter the terrain within your body to promote healing. 

RECOVERY: WHAT DOES IT MEAN?
     With regard to CFS, "recovery" is a highly charged term that means different things to different people. The complex nature of this syndrome provokes us to look carefully at our use of this word. With many other illnesses, recovery usually suggests a "return to the old," recovering the old way of life, resuming the activities and lifestyle to which we had grown accustomed. Yet, one of the greatest mistakes people with CFS can make is to hold a vision of recovery as "returning to the way I was living before I got sick." The difficulty is that, given the multicausal perspective, the way you were living before you got sick may have been a co-factor in your getting sick. 
     This raises the question of what it is that we hope to recover. Obviously, if you believe that certain lifestyle factors may have contributed to your vulnerability to CFS, and your vision is to return to those same conditions, then in that sense recovery is not desirable, nor is it likely to endure. If, on the other hand, recovery means re-establishing a sense of equilibrium, control, harmony, and quality in your life, then yes, recovery is desirable. 
     Below we will explore two broad perspectives on the meaning of recovery. One looks at recovery in quantitative terms, the other in qualitative terms. 

Quantitative: Recovering a Prior Level of Functioning
     Many clinicians and people with CFS think of recovery in terms of activity level or level of daily functioning. This entails a comparison of your current activity level to your pre-illness level. This of course is the first concern most people have, since it addresses the most obvious source of distress with CFS--not being able to do things in daily functioning like we did before. This approach defines recovery in quantitative terms, as in how much energy and activity you have compared to before. In this view, full recovery means a full return to pre-illness levels. 
     Clinical experience indicates that in terms of activity level many patients improve in two to four years, though not necessarily back to pre-illness levels. There is however a range of responses. There are those who seem to improve faster. I have known former patients who, through learning the art of moderation, have been able to run, windsurf, or ski again. On the other hand, as observed by Jay Goldstein, M.D. of the Chronic Fatigue Syndrome Institute of Beverly Hills, there are a minority of patients who experience progressive worsening of symptoms.7 
     While it is impossible to predict for a given individual what degree of activity will be reclaimed, there is plenty of reason for hope of re-establishing a satisfactory level of functioning. This is especially true for those who take an active role in health promotion. What is "satisfactory" is of course a subjective judgement, and depends a great deal on your expectations and standards for what is acceptable.

Qualitative: Recovering a Sense of Equilibrium and Control
     I have known many former patients who describe themselves as recovered from CFS, but whose outward lives look very different from before the illness. From the quantitative point of view, they might be working fewer hours, getting less achieved, exercising with less intensity or duration, taking more rest than before, and paying more attention to managing their energy. Yet there has been a dramatic positive change in their sense of equilibrium and control in their lives. There is a new understanding and respect for the body's responses to stress or challenge. 
     Their values and interests have changed, making them more appreciative of what they have. They may place less emphasis on outward performance or achievement, and more emphasis on living in harmony with their relationships and their surroundings. And amid all these changes has arisen a clearer sense of purpose, meaning, and living in balance, qualities that they did not have before the illness.
     As a result, the recovery they are describing is not a matter of picking up where they left off. Rather it is a departure from the direction they had been taking before, an expansion into new ways of living that make their lives richer and more meaningful. For many, this "recovery" has taken place while adjusting to and accepting a level of overall energy and outward functioning that is lower than what they had prior to CFS.
     We will explore the meaning of recovery at greater length in the next chapter. For now, consider the proposition that where CFS is concerned, recovery and discovery go hand in hand. The goal should not be limited to recovering the old, in the quantitative sense; it should include discovering the new. For some it takes courage to accept that this illness may signal the end of one way of life and the beginning of another. For others, this may come as a relief.
     Recovery from CFS is both a challenge and an adventure, and as you will see later in the stories of others, unexpected rewards await you.


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