A Reasoned Approach to Fighting Fatigue

By David Hoh

Benjamin H. Natelson, MD, director of the New Jersey Chronic Fatigue Syndrome Center and principal investigator at one of two federally funded CFS Cooperative Research Centers, has published a book about fatigue and his approach to treating it.

Facing and Fighting Fatigue: A Practical Approach, takes a broad view of fatigue as a complaint and at its causes and treatment, particularly with regard to stress and sleep. Major portions of the book focus on chronic fatigue syndrome -when fatigue moves from a problem of simple tiredness and "crosses over into disease." For the latter, Dr. Natelson describes the history and development of chronic fatigue syndrome as a distinct disease and compares and contrasts it to other illnesses that share common symptoms, including depression. He discusses possible causes and theories about the illness and discusses a range of treatment options, particularly those that are generally accepted as helpful by the medical community. And he discusses the role of sleep, stress and exercise in fatigue, again differentiating between common fatigue and the severe fatigue of CFS.

In a recent interview with the Chronicle, he acknowledged his approach is conservative.

"I tell my patients, look, I'm a professor in a medical school (the University of Medicine and Dentistry of New Jersey), so you're not going to get a lot of experimental stuff from me. But I've found that a lot of people are very receptive to being taken seriously," Dr. Natelson explained.

"I'm pragmatic. I don't make promises I can't keep. You know, we don't do much healing in internal medicine, but we can help, and I feel I can do that with this illness. What I do for my patients is try to take the Problem apart, see what's bothering them the most, and try to help them with that. That seems to work to help."

Depending on the patient's symptoms, Dr. Natelson includes in his treatment approach a number of drugs to relieve insomnia, among them low doses of melatonin and sedating anti-depressants and a newer sedative called Ambien. He encourages his patients to try gentle and gradually increasing exercise, but he notes that prescription is highly individualized. Even his sickest patients, he notes, have benefited from the gentle movements of tai chi.

In evaluating a patient, he orders a rather standard series of blood tests and urinalysis, including a test called sed (sedimentation) rate that looks for inflammation of body tissues and creatine phosphokinase (CPK) to evaluate muscle chemistry. Being in the Northeast, he tests for Lyme disease. He also tests for magnesium levels and, if they are low, does a trial treatment of magnesium shots. He may also introduce a trial treatment with primrose oil and fish oil. His hope, based on limited research, is that such a simple treatment will help at least a small percentage of patients.

Among other treatments he may try after further testing are DHEA, increased salt intake and support stockings where blood pressure is an issue, and licorice extract as an alternative to Florinef. He'll also use low doses of antidepressants, among them amitriptyline or related drugs, to help relieve pain and sleeplessness. For more severe muscle and joint pain, he describes his use of Ultrarn and Neurontin, the antimalarial drug Plaquenil, and steroids, and he points out the need for further research studies involving these drugs.

For severe and unrelenting pain, he will refer a patient to a pain clinic with experience in such treatments as acupuncture and biofeedback and the use of opiates. Where "brain fog" remains a critical problem, he will work with a psychiatrist in the use of brain stimulants such as Ritalin or Cylert.

"I won't do anything there isn't a real good rationale for, but I do have my six-week rule for almost every treatment. If it won't hurt you physically or financially, we'll try each treatment for six weeks and then evaluate whether it's helping."

He worries that some things patients want to try, treatments or tests they've heard other doctors doing, may be dangerous if not to the patient's health, then at least to their finances.

"Sometimes a doctor gets a notion about this illness and then leaps to the belief that his interpretation of the illness is complete. Then the doctor starts treating patients like his ideas are definitely true when they haven't really been tested."

Dr. Natelson, a professor of neurosciences and a former research neurologist for the U.S. Army, is also medical director of the Gulf War Research Center at the Veterans Administration Medical Center in East Orange, N.J. He explained that he spends the bulk of his time "thinking about what experiments we should be doing and about the data we're getting and how to understand this illness." One day a week, he puts on his physician hat and sees patients.

His book, he said, is a way to get his philosophy and the way he deals with patients out to a greater number of people, particularly those who can't come to New Jersey to see him.

"I think I have a sense of the whole illness, and I felt I could translate the current knowledge base into words that would make sense to people." He's also written a book for young doctors, not to teach them about CFS but to stress his point that the absence of an abnormal lab test doesn't mean there's no disease.

"I think the most important thing I can do as a professor is to teach them to respect the patient and take sufficient time to hear what the patient has to say, because if you have just a few minutes with a patient and they don't say the right things, then you're going down the Yellow Brick Road. That's a problem with the 30-minute new patient interview. I'm pretty efficient, but it takes me an hour and a half to evaluate a new CFS patient and really find out what's going on."

The CFS Research Center has a number of research projects in various stages.

"We're finishing up some studies on the autonomic nervous system, as well as a study looking at brain MRIs and trying to correlate abnormalities with neuropsychiatric problems. And our immune studies are coming to closure.

"We have a major fitness trial -this is an important area for patients where we're trying to see if a very gentle physical conditioning program in which the patient works with a technician will be helpful.

"And we're just starting a trial using the Mannatech product, Ambrotose. (See box below.) They've asked us to do a doubleblind study because they believe their patented food supplement can be effective in treating fatigue." Dr. Natelson acknowledged that careful, scientific studies by unbiased research groups are rarely done on nutritional supplements, but "the company was willing to put its money where its mouth was and do a formal study."

"We're very serious about understanding this illness, so we have a lot of irons in the fire," Dr. Natelson said. "One of the advantages of treatment trials is that if they're successful, they tell you a lot about the etiology. That's why the treatment trials are as important as the physiological studies."

Patients interested in finding out about or participating in any of the research at the CFS Research Center in Newark, N.J., may call 973/972-2552. A questionnaire will be mailed to you to help determine your appropriateness for a particular study. Not every patient will be appropriate for every study, because the criteria are set carefully to control the variables, that is, to limit other potential reasons for a particular
response to treatment. Patients pay no costs for the medical evaluations and treatments involved in the study. However, transportation and lodging are the patient's responsibility. The center is 15-20 minutes from Newark International Airport, where a variety of inexpensive lodging is available.

Some studies involve just two to four days at the center. The fitness trial, however, requires a 10-week commitment, three times a week. With that particular study, in order to involve more patients and to minimize expenses, the personal trainer conducting the trial is traveling to the some study participants in northern and central New Jersey, wherever there is a small group participating. However, that is an extraordinary response to the particular demands of that trial. Generally, to participate in a trial, the patient needs to visit the center.

Researchers and company officers at Mannatech did not return repeated calls from the Chronicle. We enlisted the help of a local marketer for the company, but we were still unable to reach a spokesperson or researcher associated with the firm. A secretary said the company's researchers don't give media interviews, would have nothing to add to the published results of their studies, and would not comment on a specific trial until the results were published.

The company, based in Coppell, Texas, sells a variety of nutritional supplements based on Ambrotose through a network marketing system. Its published material describes Ambrotose as a carbohydrate complex containing eight essential sugars. The company's literature claims the products improve cellular communication, help the body burn fat and regenerate skin tissue, aid in energy production and in the recovery from physical or emotional stress, and support the immune system. Other materials published or distributed by the company suggest that its products can be helpful in treating alcoholism, dyslexia, hepatitis C, herpes infections, periodontal disease, asthma and TaySachs disease, in addition to chronic fatigue syndrome.

The study at the New Jersey CFS Research Center is believed to be the first independent trial of the product for CFS.

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