A Mysterious Illness Receives Recognition

CFS (chronic fatigue syndrome) is “a major health and economic threat, second only to that of AIDS.”

THAT is what Dr. Byron Hyde of Canada said during the world’s first CFS symposium, in Cambridge, England, in April 1990. In fact, Dr. Jay Levy, a San Francisco AIDS researcher, called CFS “the disease of the ’90’s.”

Emergency Medicine explained that CFS is “a multisystem disease that affects the central nervous and immune systems and often the musculoskeletal system.” Concern over the disease has become great. When the U.S. magazine Newsweek ran a cover story on it in November 1990, the issue became the publication’s biggest seller of the year.

The CDC (U.S. Centers for Disease Control) in Atlanta has taken the illness seriously. In 1988 this leading U.S. health agency officially recognized this mysterious ailment by providing physicians criteria, or a set of signs and symptoms, for diagnosing it. The agency named the disorder chronic fatigue syndrome because its common, major symptom is fatigue.

Problem With the Name

Many, however, feel that the name is unfortunate. They say that it minimizes the illness, since the fatigue that characterizes CFS is different from ordinary tiredness. “Our fatigue,” one patient explained, “is to ordinary tiredness what lightning is to a spark.”

Dr. Paul Cheney, who has treated hundreds of CFS patients, says that calling it chronic fatigue is “like calling pneumonia ‘chronic cough syndrome.’” Dr. J. Van Aerde, who himself was stricken by CFS, concurs. A short time ago, this doctor held two full-​time jobs​—he was a physician at night and a scientist during the day, besides being a husband and a father. Last year he told of his experience with CFS, and Canada’s Medical Post published his account:

“Imagine a disease that zaps all your energy, making lifting the covers to get out of bed a real effort. Walking around the block, even at a snail’s speed, has become a major undertaking, picking up your toddler a breathtaking experience. You avoid your study in the basement because you cannot make it back up the stairs without having to sit and rest half way. Imagine, you can read the words and sentences of a newspaper article, but you can’t put it all together . . .

“Imagine feeling like you were receiving hundreds of intramuscular injections simultaneously in all your muscles, making it painful to sit, impossible to move, making a hug no longer pleasurable. . . . Imagine frequent chills, cold sweats, often accompanied by low-​grade fever. Combine all the symptoms and compare it with the worst flu you have ever fought, except it is much worse and lasts for a whole year, perhaps longer.

“Imagine the anguish and the bottomless disappointment when you relapse again and again, just when you thought you had beaten this thing. Imagine being scared, panicking because you feel imprisoned in a foreign body, and you don’t know when or even if it all will end.”​—September 3, 1991.

The name given the illness in the United Kingdom and Canada underscores the seriousness of the ailment. There it is called myalgic encephalomyelitis, or ME for short. “Myalgic” draws attention to the muscle pain, and “encephalomyelitis” to the effect the disorder has on the brain and the nerves.

Since the disorder affects the immune system, patient support groups in the United States, of which there are now hundreds, have named it CFIDS (chronic fatigue immune dysfunction syndrome).

Is this really a new clinical problem? How has it come to public attention?

Historical Review

CFS is probably not a new illness. Some have identified it with an array of symptoms that in the last century was called neurasthenia, a name drawn from the Greek denoting “lack of nerve strength.” The symptoms of CFS are also similar to those of fibromyalgia, which is also known as fibrositis. Some even believe that CFS and fibromyalgia may be the same syndrome.

Many outbreaks of CFS-​like illnesses have been reported in previous decades, most of them in the United States. But they have also occurred in England, Iceland, Denmark, Germany, Australia, and Greece. Names to describe the syndrome were Iceland disease, Akureyri disease, Royal Free disease, and others.

More recently, in 1984 about 200 people in the small town of Incline Village, near the California-​Nevada border, suffered a flulike illness that persisted. “We knew them as productive, happy, vigorous adults,” explains Dr. Cheney, who treated many of them. “All of a sudden they got sick and wouldn’t get well. In some cases they were sweating so much at night their spouses had to get up and change the bed sheets.”

Some disparagingly called this outbreak of illness at Incline Village Yuppie flu, since middle-​class, upward mobile young people were predominately affected. It was thought that patients might be suffering from acute infectious mononucleosis, but tests for that disease came up negative for most of them. Blood tests, however, did reveal high levels of antibodies to the Epstein-​Barr virus, a type of herpesvirus. Thus, for a time, the illness was commonly known as chronic Epstein-​Barr.

The Illness Gains Recognition

When Dr. Cheney reported to the CDC what was happening in Incline Village, little credence was at first given to his report. But from around the country, reports of similar health problems were soon received.

In time, studies indicated that the Epstein-​Barr virus was not a causative factor in most cases. Actually, this virus is present in about 95 percent of the adult population. It lies asleep inside people’s bodies. “When it’s awakened,” a doctor doing CFS research explained, “it may contribute to the disease.” But not necessarily.

A lot of research is being conducted to find the causes of CFS. As a result, more and more doctors are acknowledging that a real medical problem is affecting perhaps millions of people. Dr. Walter Wilson, the chief of infectious diseases at the Mayo Clinic in Rochester, Minnesota, U.S.A., said that he has changed his attitude. Seeing so many seeking help at great financial expense, he says, “you have to treat them with respect for what they are going through.”

Clearly, many lives are being devastated by an illness with common symptoms. The CDC receives thousands of calls about the condition every month, and only AIDS prompts more inquiries to the U.S. National Institutes of Health. “Something is going on,” explained Dr. Walter Gunn, who was in charge of CFS research at the CDC before his recent retirement. “But whether it’s one disease or several, one cause or more, is not clear.”

Some believe that CFS is primarily a psychiatric problem. The December 1991 American Journal of Psychiatry noted: “The authors argue that chronic fatigue syndrome will meet the same fate as neurasthenia​—a decline in social value as it is demonstrated that the majority of its sufferers are experiencing primary psychiatric disorders.” And a new book, From Paralysis to Fatigue, characterizes CFS as “a disease of fashion,” implying that it will not prove to be a significant illness.

Is CFS primarily a psychiatric problem? Are the symptoms usually due to depression? Is CFS a real disease?

Is CFS a Real Disease?

“I WENT to doctor after doctor,” explained Priscilla, a CFS (chronic fatigue syndrome) sufferer from Washington State, U.S.A. “I got blood tests and was questioned about my life-​style. They said that nothing was actually wrong with me and suggested that I seek psychiatric counseling. None of the doctors were willing to take me or my symptoms seriously.”

The experience is typical. A doctor writing in JAMA (Journal of the American Medical Association) last year said: “The average CFS patient had previously consulted 16 different physicians. Most were told that they were in perfect health, that they were depressed, or that they were under too much stress. Many were sent to psychiatrists. The situation is better today, but not by much.”

CFS poses unique challenges, as The American Journal of Medicine observes: “The stress of dealing with an illness in which one looks physically well, has a normal physical examination, and normal laboratory test results is significant. The illness is frequently associated with strained relationships between spouses, other relatives, employers, teachers, health professionals, and insurance companies.”

A challenge to doctors is that fatigue is such a common symptom. “If a physician had $1 for every patient who complained of tiredness, he or she could quit practicing,” a medical editor wrote. But, obviously, few who complain of fatigue have CFS. Since there is no medical test for the illness, how can the physician diagnose it?

A Definition of CFS

In March 1988 the CDC (U.S. Centers for Disease Control) published in Annals of Internal Medicine a group of signs and symptoms that collectively characterize CFS. (See accompanying box.)

The major criteria for diagnosing CFS are (1) the new onset of fatigue that lasts longer than six months and reduces one’s level of activity by 50 percent and (2) the exclusion of other medical or psychiatric conditions that could cause the symptoms. However, to be diagnosed with CFS, the patient also must suffer either 8 of the 11 symptoms on the list of minor criteria or 6 of 11 of these symptoms as well as 2 of 3 from the list of physical criteria.

Clearly, those who meet the diagnosis for CFS are extremely sick for a long time. The CDC made the definition of CFS very restrictive to identify these persons clearly. Those who have less severe forms of the syndrome are presently excluded by this definition.

Could CFS Be Depression?

What about doctors who say that CFS patients suffer from depression and other psychological disorders? Do these patients have the classic symptoms of depression?

CFS patients are commonly depressed, but as Dr. Kurt Kroenke, professor at a medical school in Bethesda, Maryland, U.S.A., asked: “Wouldn’t anyone be depressed if he or she stayed tired for a year or more?” So it is fair to ask: Is depression the cause of CFS, or is it a consequence?

That question is often difficult to answer. A doctor may consider the second point of the major criteria, which says that ‘psychiatric conditions that could cause the symptoms need to be excluded,’ and conclude that the patient suffers from depression and not from an organic or physical illness. Yet, in many cases this is not a satisfactory diagnosis.

The medical journal The Cortlandt Consultant noted: “The most compelling piece of evidence that CFS is an ‘organic’ illness is its sudden onset in 85 percent of patients. The majority of patients state that their illness began on a particular day with a flu-​like syndrome characterized by fever, [sore throat, swollen lymph nodes, muscle aches], and related symptoms.” Physicians who have handled CFS patients are convinced that depression is often not the cause of symptoms.

“When we compared our cases,” reported Dr. Anthony Komaroff, chief of General Medicine at Brigham and Women’s Hospital in Boston, U.S.A., “we were struck by the fact that most patients said they had been perfectly healthy, energetic and successful in life until one day they developed a cold, flu or bronchitis and it never went away. The symptoms that could be considered psychological​—depression, malaise, sleep disturbances and so forth—​didn’t exist before the onset of the illness.”

One classic symptom of depression is loss of interest in everything. But Dr. Paul Cheney explained: “These patients are just the opposite. They’re terribly concerned about what their symptoms mean. They can’t function. They can’t work. Many are petrified. But they do not lack interest in their surroundings.”

Swollen glands, fever, unusual white-​blood-​cell counts, repeated respiratory infections, muscle and joint pains, and especially a peculiar malaise and muscle soreness that may occur after even moderate exercise​—these symptoms just don’t fit a depression-​related syndrome.

The Weight of Recent Evidence

In its November 6, 1991, issue, JAMA reported: “Preliminary data from an ongoing study of patients who meet the CDC’s definition of chronic fatigue syndrome (CFS) show that most patients with the illness are not victims of depression or other psychiatric problems.”

Dr. Walter Gunn, who closely monitored CFS research at the CDC, explained in this issue of JAMA: “Despite the fact that many physicians would have thought all of these patients [in the study] were depressed, we found that only 30% of the CFS patients had evidence of depression at the onset of fatigue.”

There may even be physical differences between many CFS patients and sufferers of depression. “Patients with major depression disorder (MDD) often have abnormalities in rapid-​eye-​movement (REM) sleep, whereas patients with CFS have abnormalities in non-​REM [sleep],” noted the medical journal The Female Patient.

The magazine Science of December 20, 1991, reported another significant finding. It said that research indicates that “CFS patients have altered levels of certain brain hormones” and observed: “Although the differences from normal controls were modest, CFS patients consistently showed decreased levels of the steroid hormone cortisol, and increased levels of the pituitary hormone ACTH (adrenocorticotropin hormone), exactly the opposite of the changes seen with depression.”​—Italics ours.

What if CFS Is a Real Disease?

The medical profession is skeptical of disorders it does not understand, such as CFS. “Skepticism permeates our profession,” wrote Dr. Thomas L. English. “Healthy skepticism is the ‘in’ attitude for intelligent, discriminating physicians.” Yet, Dr. English questions how healthy it is for the suffering patient “if CFS is a real disease.” He asks skeptical fellow doctors: “What if you are wrong? What are the consequences for your patients?”

Dr. English himself suffers from CFS, and last year JAMA published his article directed to fellow physicians. He invited them to put themselves in the place of the suffering patient, describing the syndrome:

“You catch ‘a cold’ and thereafter the quality of your life is indelibly altered. You can’t think clearly . . . Sometimes it’s all you can do to read the newspaper or to follow the plot of a television program. Jet lag without end. You inch along the fog-​shrouded precipice of patient care, where once you walked with confidence. Myalgias [muscle aches] wander about your body with no apparent pattern. Symptoms come and go, wax and wane. . . . You too might wonder about some of your symptoms had you not talked to other patients with similar experiences . . . or talked with physicians who have seen hundreds of similar cases. . . .

“I have talked with scores of fellow patients who went to our profession for help, but who came away humiliated, angry, and afraid. Their bodies told them they were physically ill, but the psychospeculation of their physicians was only frightening and infuriating​—not reassuring. It told them their doctors had little understanding of the real problem. . . . Are we to believe that just because symptoms are strange and unfamiliar they cannot be real? Are we to assume that our laboratory tests are capable of screening for new diseases as well as old? Distrust of new ideas is as old as humankind; so are the harmful consequences of that distrust.”​—JAMA, February 27, 1991, page 964.

Value of Acknowledging Illness

“Doctors who spend a lot of time talking to patients with CFS hear a story that is absolutely repeatable; it’s a classic,” noted Dr. Allan Kind, an infectious diseases specialist. “I can tell you that Chronic Fatigue Syndrome is real.”

More and more doctors now agree. The Female Patient thus encouraged physicians: “Until a definite diagnosis and an appropriate treatment can be established, the physician has a special responsibility to tell these patients that they do indeed have a real illness, and that it is not ‘all in their heads.’”

The benefit of validating a patient’s illness can be tremendous. When a doctor told one woman she had CFS, she said: “The tears just welled up.” To hear a doctor say her illness was real, and that it had a name, was such a relief to her.

Yet, what causes CFS? What has research revealed?

[Box on page 7]

Diagnostic Criteria for Chronic Fatigue Syndrome

Major Criteria

 1. New onset of fatigue lasting longer than six months with 50 percent reduction in activity

 2. No other medical or psychiatric conditions that could cause the symptoms

Minor Criteria

Symptoms must begin at or after onset of fatigue

 1. Low-​grade fever

 2. Sore throat

 3. Painful lymph nodes

 4. Generalized muscle weakness

 5. Muscle pain

 6. Prolonged fatigue after exercise

 7. Headaches

 8. Joint pain

 9. Sleep disturbance

10. Neuropsychologic complaints, such as forgetfulness, confusion, difficulty concentrating, depression

11. Acute onset (over a few hours to a few days)

Physical Criteria

 1. Low-​grade fever

 2. Throat inflammation

 3. Palpable or tender lymph nodes

[Picture on page 8]

Doctors must be perceptive to distinguish between depression and chronic fatigue syndrome

In Search of a Cause

IT TOOK years to discover what was disrupting the immune system of AIDS patients, but it is taking even longer to identify what is wreaking havoc on the bodies and the brains of those with CFS (chronic fatigue syndrome). Although the cause has not been determined, medical authorities are able to present convincing evidence of physical abnormalities in patients. In fact, such evidence has been used in court.

Canada’s Medical Post reported that in a controversial case, medical experts presented testimony to support the defense’s claim that the patient’s ability to make judgments had been impaired by his illness. Justice William G. N. Egbert was thus moved to conclude: “The disease affects every area of judgment. . . . Small areas of the brain are injured.”

Is there truth to this?

Brain Abnormalities

Medical research supports the contention that the brain of CFS patients is affected. The New York Times of January 16, 1992, carried the headline: “Study Detects Brain Abnormality in Patients With Chronic Fatigue.” The article, based on a report published the day before in Annals of Internal Medicine, observed:

“The largest study yet of chronic fatigue syndrome has found evidence of inflammation in the brains of patients, the first documentation of a neurological abnormality connected with the mysterious ailment.” The article added: “The study is the latest of a recent series showing immunologic and hormonal differences between those with the syndrome and healthy people.”

Another study that drew wide attention was reported in the December 1991 issue of the Journal of Clinical Endocrinology and Metabolism. It found indications of hormonal deficiencies in the endocrine glands and brains of people with CFS. The study thus added to evidence that biochemical and immunological factors produce the symptoms of CFS.

Dr. Walter Gunn, while serving at the CDC (U.S. Centers for Disease Control), monitored many studies of CFS patients. He noted that “some good scientists are beginning to get involved in CFS research.” Although the findings of these researchers often pointed to different possible causes, Dr. Gunn emphasized: “The one thing that is consistent is that nobody is reporting there are no abnormalities.”

What possible agent or agents are responsible for CFS? Is a virus involved, or viruses? If so, in what way? How is the immune system adversely affected? How could its dysfunction cause the symptoms manifest in CFS patients?

Possible Causes

Research indicates that viruses are involved. But what viruses? Many have been implicated by researchers. “Retroviruses, spuma or ‘foamy’ viruses, enteroviruses, Epstein-​Barr virus, and human herpesvirus type 6 are all among the popular and highly controversial contenders,” observed The Journal of the American Medical Association last November.

In what way may viruses cause CFS? That is unknown. However, Dr. Anthony L. Komaroff, a leading CFS researcher, noted: “The pattern that is emerging is a chronically activated immune system, an immune system engaged in some kind of chronic war against some kind of thing that it perceives as foreign.”

A healthy immune system responds to an enemy virus, or viruses, by releasing chemicals, called cytokines, to fight the invaders. However, when the emergency is taken care of, the production of cytokines normally ceases. But in CFS patients the immune system apparently fails to shut off. Significantly, a consistent finding in people with CFS is an increased production of cytokines.

This is important, since it is not the virus that makes a person feel sick when it invades his body. He feels ill because his body cells are producing cytokines, which cause the fever, achiness, and fatigue. Dr. William Carter, a U.S. medical professor, noted: “The cytokines remain and begin to damage the host until ultimately we see the profoundly bedridden patient who can barely move.”

However, what causes the immune system to keep producing cytokines when it should have ceased production? “A latent virus is activated by some sort of trigger,” according to Dr. Jay A. Goldstein, “which makes the cells of the immune system produce [cytokines] in abnormal amounts.”

Additionally, it appears that natural killer cells and macrophages, which are frontline defenses against invading organisms, are reduced in either number or function in CFS patients, further weakening the immune system. The significant thing is that the immune system of CFS patients seems to malfunction, although opinions vary as to why it does.

As noted in the previous article, doctors often observe that in many patients depression is not the cause of CFS. However, in other patients some doctors feel that psychological problems, such as depression, may be a causative factor. Interestingly, research has revealed that depression can damage the immune system. “Psychological distress itself can produce disturbances in neurohormonal and immunologic function,” writes Dr. Kurt Kroenke, of the Walter Reed Army Medical Center in Washington, D.C.

Thus, in some instances depression may trigger changes in the immune system that may contribute to CFS. Yet, many other factors that can weaken the immune system are probably also involved.

Numerous Factors

Most investigators agree that it is very unlikely that one thing is causing CFS. “Instead, CFS probably is an illness that occurs in a vulnerable individual in whom depression, [allergies], viral infections, or other factors have resulted in some degree of immune compromise,” explained the medical journal Cortlandt Forum.

A doctor, writing in Canada’s Medical Post, noted: “There might be a hereditary susceptibility required and an overused body might be another predisposition. Then an acute event, most often an acute viral infection, hits the strained individual. The combination of all these factors probably induces damage to the immune system.”

“Stress is one of the biggest triggers we see,” said Dr. Charles Lapp. “Sometimes we have seen certain chemicals play a role. . . . And curiously a number of my patients (although we’ve never done a study) have mentioned that insecticides, paints, and varnishes seemed to have been involved when their disease was triggered off.”

Never in history have people been exposed to greater assaults on their bodies by environmental pollution. Food additives and drugs may also harm the body and adversely affect the immune system. Certain doctors even claim that long courses of antibiotics depress the immune system.

Other factors too may be involved in the suffering seen in thousands of CFS patients. But while there are tantalizing clues and intriguing possibilities, the cause of CFS is still unknown.

A Sign of the Last Days

In his great prophecy about the last days of the world system, Jesus Christ foretold: “There will be . . . in one place after another pestilences.” (Luke 21:11) How true this is of our time! Many of today’s diseases have no known cause, yet this does not make them any less real or debilitating.

CFS is apparently just another illness that makes up part of the sign Jesus said would mark the last days. But realizing this does not make life any easier for those who are suffering. How can CFS patients deal with their affliction?

Meeting the Challenge of CFS

DOCTORS at a symposium were discussing the treatment of CFS (chronic fatigue syndrome) during a telecast when one of them said: “These patients all look as healthy as everybody on this panel.” Because such patients don’t look sick, they are often treated in a way that increases their misery.

Patricia, a CFS sufferer in Texas, noted: “Sometimes I have felt like Job, whose companions weren’t always helpful.” A visitor, for example, once told her: “You look fine to me! I thought you were really sick. You and my mother-​in-​law have a lot in common. She is a hypochondriac too.”

Such comments can be devastating, and they constitute a major challenge of CFS. “The emotional pain of being put down for not ‘trying’ is beyond description,” explained Betty, a CFS patient in Utah, “and is the worst part of the suffering CFS brings.”

Understanding and Love Needed

Betty expressed the sentiments of perhaps every CFS sufferer when she said: “We don’t want pity. We don’t need sympathy. But, my, how we could use some understanding! God knows our difficulties and sorrow, and that is most important. But it is also vital that we get emotional support from our Christian brothers and sisters.”

For many people, however, CFS remains difficult to understand, as a young sufferer from Washington State noted recently. “The one thing I wish people had more of is empathy,” she said, “not sympathy, but empathy. And that is impossible because not many people have ever dealt with an illness like this.”

Yet, it shouldn’t be impossible to understand CFS sufferers. Granted, their physical condition may be beyond our experience. But we can learn about their illness until we grasp just how sick they truly are. Unlike AIDS, which kills, one patient explained, CFS “just makes you wish you were dead.” Deborah, who became ill in 1986, confessed: “For a long time, I prayed every night to God to allow me to die.”​—Compare Job 14:13.

Of course, we want to be encouraging, to help sufferers meet the challenge of CFS, but unfortunately our comments may do the opposite. For example, a well-​meaning visitor suggested to a CFS sufferer: “What you need is to drink some warm milk at night. It will help you sleep, and you’ll be all right in a few days.” That comment revealed a total misunderstanding of CFS. It hurt the sufferer more than it helped.

Sick ones may often feel unable to do such things as attend Christian meetings. When they do come, the effort involved may be far beyond what we comprehend. So rather than draw attention to their previous absences, we could simply say: “It’s so nice to see you. I know it’s not always easy for you to be here, but we’re glad to see you tonight.”​—See accompanying box.

The nervous system of CFS sufferers is often affected, making even normal interaction with people difficult. “We need to be a buffer between them and others,” explained Jennifer, whose husband has CFS. “We must help them by allowing them privacy, by never getting upset with them, and by helping them avoid any kind of confrontation.”

Jennifer admitted that the illness of sufferers can be taxing on family members, who may become tired of doing everything for them. But as she noted, if patients are not allowed to rest, their recovery will likely be delayed, and so everyone will lose in the long run. Happily, the illness apparently is rarely if ever contagious, although there does seem to be a hereditary predisposition to the affliction.

Tottie, a CFS sufferer and wife of a traveling overseer of Jehovah’s Witnesses, said that for years her husband has helped her meet the challenge of the illness. She lets him know of her appreciation but noted: “Friends often inquire about me and my welfare, but Ken needs encouragement too.”

Positive Prognosis​—But Danger

CFS is rarely if ever fatal. That knowledge may help you meet the challenge. Most get better in time, and many recover. Dr. Anthony Komaroff noted: “Not one patient that we have seen out of the hundreds that we have studied has had a chronic, progressive downhill course where they have gotten worse and worse and worse over time. No one has had that. So unlike some other illnesses that progress inexorably, this illness is quite different.”

In confirmation, Dr. Andrew Lloyd, a leading CFS researcher in Australia, said: “When recovery occurs, and we believe that happens commonly, that recovery is complete. . . . That, therefore, implies that whatever this process is that produces this fatigue state is completely reversible.” Apparently patients have no detectable damage to body organs after recovering.

Deborah, who had regularly prayed to die because she felt so sick, finally improved. She feels like her old self and said recently that she plans to rejoin her husband in the full-​time ministry. Others have enjoyed similar recoveries. Yet, there is need for caution. Why?

Keith, who suffered a relapse, warned: “It’s very important not to underestimate this problem, not to be too quick to think it has passed.” When feeling well again, Keith reentered the full-​time ministry and resumed his athletic activity, regularly running and lifting weights. But, tragically, the illness returned, and he was bedridden again!

This is the insidious nature of the illness; relapses are common. Yet, they are difficult to avoid. As Elizabeth explained: “It is so hard not to try to make up for lost time when you begin feeling better. You so badly want to forget about sickness​—you want to do things.”

For that reason it requires great effort and patience to meet the challenge of CFS.

What Sufferers Can Do

It is important that sufferers adjust mentally to a chronic illness that has an unpredictable course. Beverly, a longtime sufferer, explained: “If I start believing I have really got well during my good weeks or months, I usually fall harder than ever physically. So I constantly work on accepting my limitations.” Keith said: “Patience is probably the most important factor.”

CFS sufferers need to conserve their energy and permit their bodies to heal. Thus, those who are successfully coping with CFS emphasize the value of what is called aggressive rest therapy. This means preparing aggressively for coming events by getting extra rest in advance. As a result, CFS sufferers may be able to attend Christian assemblies or other special events without suffering unduly afterward because of the exertion.

Vital, too, is maintaining a calm, mild spirit, since mental or emotional stress can precipitate a relapse just as easily as can excessive physical exertion. So good advice is: “Don’t waste your energy defending yourself.” Yes, avoid trying to explain your condition to skeptics who don’t understand.

If you suffer from CFS, you need to remember that it is not what others may think of you that matters but it is what our Creator, Jehovah God, thinks. And he appreciates your situation and truly loves you for whatever you do to serve him. You can trust that Jehovah and the angels are watching, not your productivity, but, as with Job, your attitude, endurance, and faithfulness.

Susan, who has been bedridden with CFS for the better part of two years, noted that one of the most devastating features of CFS is that a person can feel as if there were no purpose to life. So she recommends: “Find things that bring you joy or fulfillment. I have three African violet plants, and I look at these every day for new buds.” But of greatest importance, she says, is to “rely on Jehovah through prayer and to make your spirituality a priority.”

Many sufferers say they find it helpful to listen to tape recordings of the Bible and of the Watchtower and Awake! magazines. Significantly, Priscilla, mentioned in the second article, commented that once a person reaches the point where he stops dwelling on what has been lost, “CFS isn’t so overwhelming anymore.” She said: “To keep myself from thinking that this condition is going to last forever, I have placed encouraging scriptures in conspicuous spots around my room.”

What About Treatment?

At present little more can be done medically than treat the symptoms. There were high hopes for the experimental drug Ampligen. Many taking the drug seemed to improve, but adverse side effects experienced by some caused the U.S. Food and Drug Administration to put its further use on hold.

Sleep disturbances, including insomnia, are common with CFS. Interestingly, an antidepressant medication​—sometimes one hundredth of the dose taken for depression—​helps some, but not all, patients sleep better and thus improve. Beverly avoided such drugs for years but then tried one. “I was helped so tremendously,” she said, “I only wish I had started sooner.”

“Many other methods [including “alternative” treatments that some patients find appealing when standard measures fail] have been tried for treating CFS,” noted The Female Patient. “These include a variety of medications, physical therapy, . . . acupuncture, homeopathy, naturopathy, anticandidal therapy, and ayurvedism, among others.”

This medical journal stated: “Regardless of personal beliefs, the physician should have some knowledge of such [treatments] to better understand and counsel the patient. Many patients are grateful just to find a physician who listens to them and takes their list of complaints seriously. . . . Most patients with CFS can be helped to feel better​—even if they are only reassured that they have a medical ally—​and many can be greatly improved.”

Since there is no cure, some question the value of going to a physician. The vital benefit of seeking such help is that tests can exclude other diseases that may have similar symptoms, such as cancer, multiple sclerosis, lupus, and Lyme disease. If these are identified at an early stage, valuable treatment can be given. Emergency Medicine recommends to physicians: “Once you’ve made the diagnosis, your best course of action is to refer the patient to a chronic fatigue syndrome study center.”

Rest is recognized as the best treatment, but a careful balance must be struck. So the best advice is: Learn to pace yourself. Know your limitations, and work within them, day by day, week by week, month by month. Gentle exercises, such as walking or swimming in a warm pool, can be beneficial as long as they are not taken to the point of either physical or mental fatigue. A healthy diet that helps to strengthen the immune system is also important.

Hopelessness may accompany this disease, as was tragically illustrated by one sufferer named Tracy who despaired and committed suicide. But death is not the answer. As a bereaved friend said: “I know what Tracy really wanted. She didn’t want to die. She wanted to live​—but to live free from suffering. And that must be our goal.” Yes, it is an excellent goal. So focus your hopes, not on dying, but on surviving to reach that goal, whenever it comes.

CFS is one of many strange illnesses to add to the list of scourges that afflict modern mankind. Whatever progress medical science may make, it will take more than medical skill to cure them all. The Great Physician, Jehovah God, has in mind nothing less​—a worldwide cure of all sicknesses—​through the loving administration of his Kingdom government. At that time “no resident will say: ‘I am sick.’” That is the sure promise of God!​—Isaiah 33:24.

[Box on page 12, 13]

How Others Can Help

What Not to Say and Do

◆ “You sure look good” or, “You don’t look sick.” Saying such things makes the sufferer feel as if you don’t believe in the severity of his symptoms.

◆ “I feel tired too.” This comment minimizes the suffering. CFS involves much more than merely being tired. It is a painful, debilitating disease.

◆ “I’m tired. I think I might have CFS too.” This may be said in jest, but there is nothing funny about CFS.

◆ “I wish I could take a few days off to catch up on my rest.” CFS patients are not on vacation.

◆ “You were working too hard. That’s why you got sick.” This may imply to the sufferer that he is to blame for what has happened.

◆ “How are you?” Don’t ask unless you really want to know. Frankly, the sufferer generally feels terrible but may not want to complain.

◆ “So-​and-​so had CFS, and she was only sick for a year.” Each case of CFS is different in duration and severity, and pointing to another’s early recovery can be discouraging to one suffering longer.

◆ Don’t offer medical advice unless you are asked for it and are qualified to give it.

◆ Don’t imply to CFS patients that if they have a setback, it must be because of something they did.

What to Say and Do

◆ Show that you believe they are really sick.

◆ Make a phone call, or go to visit. Calling first is usually a good idea.

◆ Respect any restrictions as to visitors or phone calls.

◆ If a person cannot have visitors, send a card or a letter. Patients often look forward to opening the mail each day.

◆ Be compassionate. Sometimes this just means acknowledging what the ill person is experiencing.

◆ Offer to run errands, do their grocery shopping, take them to the doctor, and so forth.

◆ You can simply say: “It’s so nice to see you. Jehovah really appreciates your faithful endurance.”