Chapter 6
Looking Forward

While much has been learned about chronic fatigue syndrome (CFS) over the past few decades, definitive clues regarding a cause or a cure for the disease still elude researchers. However, there is growing hope that this will change as more time and resources are devoted to CFS.

Living with CFS

The disease that was once dismissed as an affliction for self-indulgent "yuppies" has been taken more seriously in recent years as people realize just how widespread and potentially debilitating CFS is. Yet, with no cure in sight, CFS sufferers and those around them can find some reassurance from prominent individuals whose accomplishments are living proof that for many, it is possible to function to some extent in spite of the disease.

Author Laura Hillenbrand, who has CFS, has had numerous interviews about the success of her New York Times best-selling book Seabiscuit: An American Legend. In a number of published interviews, Hillenbrand talked freely about her battle with CFS, noting that while she was able to write an entire book, she had to write every word from her bedroom because she was too weak to move much farther.

People with CFS are quick to emphasize, as Hillenbrand does, the balance between struggling not to let CFS prevent one from pursuing goals, and acknowledging and accepting the very real limitations that the disease can place on this pursuit. Olympic Gold Medal–winning women's soccer star Michelle Akers discussed this balance when she made her CFS diagnosis public in congressional testimony about the drastic nature of the disease in an effort to persuade lawmakers to increase funding for research. And in an open and personal essay, Akers describes in detail what she managed to do while sick, and what every exertion on the field would cost her.

At my best, I could play 15–20 (or if really lucky 30) minutes of a 90 minute match, train in light to moderate intensity to stay in some kind of shape for National Team, and maintain a skeletal appearance schedule for my sponsor, Umbro. The repercussions of those activities [were] migraines and overwhelming fatigue during and especially after [the exertion] for days or weeks. It was a constant "trade-out." The trade being the ability to maintain my contact and involvement in the "normal" world and my career … with the devastating effects of that involvement on my body.⁵⁵

Akers—once called the greatest women's soccer player ever—was forced to retire from soccer just shy of the 2000 Olympics because of the incredible toll CFS took on her body, proving the point often made by CFS sufferers that sheer force of will is not enough to combat the effects of this disease.

Those who speak out about CFS are at pains to emphasize that theirs is a real illness that needs to be taken seriously. Another Olympic athlete to speak publicly is Amy Peterson, who was chosen by her Olympic teammates to carry the American flag at the opening ceremony of the 2002 Olympics. It was Peterson's fifth time competing as a speed skater in the winter Olympic Games, a feat made particularly impressive in light of the CFS diagnosis she received in 1997. Peterson, like Akers, made an effort to use her time in the spotlight to discuss the horror and reality of CFS. In an interview on NBC's Today she shared her frustration with having to respond to people who would hear of her illness and assume she just "gets tired," like everyone else. "There's definitely a difference [between being tired and having CFS],"⁵⁶ Peterson stated emphatically in the interview.

Meanwhile, along with the celebrities speaking up about CFS, support group leaders have petitioned the federal government for increased funding for research into the cause of CFS while conducting their own fund-raising as well. More and more individuals and support groups have pooled their resources and efforts to spread the word about CFS, culminating on May 12, the designated Awareness Day for CFS and fibromyalgia since 1992. As more medical journals carry articles on CFS, mass-market magazines and newspapers have increased their own coverage. Many women's magazines—probably due to the fact that more women than men are affected by CFS—now note the existence of Awareness Day in their May issues.

The increased publicity for CFS, combined with calls for action from the ever-growing numbers of people being diagnosed with CFS, has led to increased funding for research on the disease. With more money available, scientists are eagerly pursuing a deeper understanding of CFS, and several studies seem to hold the potential to yield important insights.

New Research into the Cause

The most persistent and challenging mystery of CFS remains its cause. Researchers continue to investigate the possible role of the immune system, the endocrine system, and various viruses in causing CFS. Meanwhile, doctors have found evidence pointing in the direction of several new possibilities. Researchers at the University of Washington's Chronic Fatigue Syndrome Cooperative Research Center are currently investigating the role of genetics in determining susceptibility to CFS and fibromyalgia. One study focuses on sets of twins in which one or both individuals have one of these illnesses. The purpose of the study is to attain a clearer distinction between which risk factors are inherited and which are environmental, something that can be accomplished much more easily with subjects who have similar or identical genetic material. "Say you study two people with the same genetic material," explains center researcher and associate director Dr. Niloofar Afari. "If one of them has a disease or shows certain test results and the other one does not, you can figure there may be environmental factors at play." And, of course, the reverse is true as well. "If [the twins] do show a difference, you can attribute that to what's different about the twins, which is their environment," Afari reiterates. "If they don't show a difference, you can attribute that to what's the same—their genetics."⁵⁷ The university is studying both identical and fraternal twins. Identical twins share all of the same genetic material, making them ideal subjects for the study. Fraternal twins usually share about half of their genetic material, which is still enough to provide clues as to whether one might inherit a susceptibility to CFS and to help researchers study what factors could cause only one person in the pair to develop the disease, even when both appear genetically susceptible.

The research is ongoing, but preliminary findings are promising. One early result that researchers found intriguing was that sets of twins labeled "discordant," meaning that one twin was sick with CFS or fibromyalgia and the other was not, actually showed similar abnormal results on certain lab tests. "For example," Afari explains, "in exercise testing, [the twins] both appear to be doing similarly—but similarly poorly." Yet only one of these twins is actually exhibiting the full set of symptoms for CFS or fibromyalgia, leading the researchers to wonder why the other is not. "One of the things we're focusing on is perception," Afari notes.

Two people could have exactly the same experience, yet the body systems of one would sense it, perceive it, differently than those of the other person.… It doesn't mean that you think you have CFS and therefore you do. It means that the bodies of people with CFS may sense things differently.… There's no doubt that people feel pain. You give them a strong enough stimulus, they're going to say "ouch." But at what point does somebody say "ouch"? That's perception.⁵⁸

Afari believes that further research into this question could lead to possible diagnostic markers for CFS and perhaps also to forms of treatment or even a method of preventing CFS or fibromyalgia from occurring in someone with a genetic predisposition.

Another possible causal factor that has received a great deal of attention from researchers in recent years is orthostatic intolerance (OI). OI is defined as the development of symptoms while standing or sitting upright. The number of CFS patients confined to bed led researchers to explore the significance of this problem, and in 1995 Dr. Peter Rowe first published a study showing evidence of one form of OI in people with CFS. Rowe found that 96 percent of the CFS patients in his study experienced a sharp drop in systolic blood pressure when they stood up from a reclining position. The drop in blood pressure was accompanied by an intensifying of other CFS symptoms as well, such as pain and fatigue.

Since then, Dr. Julian Stewart, among others, has explored the role of another form of OI called postural orthostatic tachycardia syndrome (POTS), also known as chronic orthostatic intolerance. In POTS, a person experiences a rapid increase in heart rate during the first ten minutes of standing. Stewart, a pediatric cardiologist, says that "the children [diagnosed with CFS] I've seen have almost all had POTS."⁵⁹ POTS has also been found in a significant number of adult CFS patients. Symptoms of POTS resemble many of the common CFS symptoms, such as lightheadedness, dizziness, nausea, fatigue, headache, and vision problems.

OI, researchers already know, is primarily a problem of the autonomic nervous system, the part of the nervous system that controls involuntary functions such as heartbeat and breathing. Thus, the connection established between POTS and CFS may lend credence to the theory that CFS is caused by a malfunction of the autonomic nervous system. However, there is still no actual cause-effect relationship identified between POTS and CFS; the existence of a relationship on its own cannot determine which problem causes the other. Researchers such as Stewart and Rowe continue to investigate this relationship, however, hoping that one day their studies will yield a more conclusive answer.

Implications for Treatment

Since treatments already exist for OI, studies have been done to explore the effectiveness of these treatments for people diagnosed with CFS. Stewart has seen a number of his CFS patients improve after receiving standard POTS treatments, including increased water and salt consumption and certain medications that treat low blood volume and cause blood vessels to constrict.

Some researchers have expanded the investigation into OI and looked at the possibility that it is actually not just low circulating blood volume, but in particular a reduced amount of red blood cell mass that is causing the CFS symptoms. Addressing the possibility that low red blood cell mass is the problem, researchers at the University of Miami are conducting a study with the drug Procrit. "In chronic fatigue [syndrome] about 60 to 70 percent of the individuals we found have a deficit in red blood cell production and it's not picked up by normal medical tests,"⁶⁰ Dr. Barry Hurwitz revealed in a television interview about the study. Procrit is typically used to treat anemia in cancer patients, but researchers hope that since the drug helps boost red blood cell production, it might help alleviate CFS symptoms. While the study is ongoing, one participant was already enthusiastic about her own response to the treatments. "We had a party at our house for the first time in about four years," Jean Gaudreau shared in the same television segment. "I felt that good. We had a Christmas tree for the first time in a number of years. I was able to clean the house. I was able to do functions. I could work. I was able to work a 40-hour week. It was just amazing the changes."⁶¹

While these treatments show promise, they are not universally effective, nor are the suggested causes they are treating (OI and low red blood cell mass) proven to cause symptoms in all CFS patients. Therefore, many efforts are still being made to increase the effectiveness of other treatments for CFS that are already in use. One treatment in particular that has gained acceptance from doctors is cognitive behavior therapy (CBT).

CBT involves working with patients to modify the way they view themselves and their illness, in order to help them adopt appropriate coping mechanisms. "[CBT] does not deny the biological basis of illness," emphasizes behavioral specialist Dr. Michael Sharpe. "[It] assumes that psychological (cognitive, behavioral and emotional) and social aspects of illness are interrelated, so that a change in one can produce change in others."⁶² In other words, even if a person is truly sick, it is still possible that a change in focus and thinking patterns can lessen the severity with which the patient experiences the symptoms. Sharpe adds:

Thoughts a person has when they're depressed, negative thoughts about their future, are not just consequences of a biological process, but also factors that keep [the biological process] going. There is actually some evidence from several studies that patients who have an exclusive, strong prediction that they have a physical disease have a worse prognosis than those who don't. The patients may be right: maybe they actually know more than their physicians about [CFS]. But it also raises the possibility that the things that go with that belief, such as loss of control and helplessness, may actually perpetuate [the illness].⁶³

Of course, the idea that one's attitude affects the course of an illness is not true just for CFS, but for many diseases and disorders. Positive thinking and a hopeful outlook have been proven repeatedly to increase a sick person's chances for recovery. However, since CFS can reach into so many corners of a patient's life, it can be particularly important for people with CFS fatigue to maintain as positive an attitude as possible.

Like the many other treatments used for CFS patients, CBT has been effective in some cases, but is still not a cure, nor does it work for everyone. People with CFS continue to experiment with combinations of old and new treatments, looking to experience as much relief from their symptoms as possible until a cure is identified.

Prospects for Recovery

The need to find a cure is compelling. According to the Centers for Disease Control and Prevention, only about 12 percent of people diagnosed with CFS experience a full and complete recovery, meaning that they return to their previously healthy states. However, many CFS patients improve significantly following their initial or worst periods of sickness. "In our experience," says Dr. Anthony Komaroff, an expert on CFS, "approximately ten to fifteen percent of patients have fully recovered from CFS. [But] the vast majority of patients feel sickest in the first six to twelve months and improve to some degree over the course of time."⁶⁴ One patient who has suffered for thirteen years says that he never felt any real relief from any of the many treatments his doctors tried. Yet, over time, his most severe symptoms eased, allowing him to leave the house and to think more clearly.

Patients and physicians also point out that it can be difficult to differentiate between having actually recovered from symptoms and having learned to cope with them better. People with CFS learn to accept a continuum of sickness and wellness, rather than a more rigidly defined contrast of "sick" and "well." Patients experience better and worse days, and sometimes better and worse years. Treatment manuals discuss periods of remission, when symptoms ease dramatically or even completely, along with the possibility of relapses, and most CFS patients describe having numerous ups and downs over the course of their illness. For example, one young CFS patient notes that with treatment she was able to leave the bed where she had been confined for years and attend college, yet that same patient cites a three-week period of time in which she pushed herself too hard and ended up back in bed for another three years.

While such cycles of health and illness appear to be the norm for adults, prospects for a more complete recovery in children seem to be slightly better. A follow-up study of some of the young patients Dr. David S. Bell saw during the Lyndonville outbreak in the 1980s revealed that 80 percent of the children had either fully recovered or shown some improvement. However, Bell cautions that some of the patients claiming to have improved have simply adapted their lifestyles to their symptoms, not actually achieved a lessening of symptoms. Moreover, the remaining 20 percent of survey respondents were still disabled by the disease.

There is no way to predict a patient's chances for improvement, but Bell has observed factors that appear to be significant. In his follow-up of the Lyndonville children, Bell found that those children who missed the least amount of school and showed some improvement during the early years of their illness were more likely to experience recovery, possibly indicating that children who experience the most severe symptoms at onset of illness and during the early years are less likely to improve than those whose symptoms start off less severe and worsen gradually. In both adults and children, the development of more severe neurological symptoms seems to reduce the chances for improvement.

While CFS offers few of its victims hope for a full recovery, most patients do experience some degree of improvement, and new treatments are being tested all the time. Meanwhile, researchers continue to search for answers to the many questions that still surround this puzzling disease, in the hopes that one day patients' suffering will be put to an end once and for all.