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Chronic Fatigue Syndrome/ME
By David Hoh •
January 1, 1999
Increasingly, Americans are paying attention to what is called an alternative approach to health. It involves essentially taking care of the body, particularly the immune system, so that the body can take care of disease. Usually the focus is on natural substances—vitamins, minerals, herbs, hormones, amino acids—which the body uses to generate energy, rid itself of toxins and stay in balance.
Alternative medicine doctors bring that philosophy to the treatment of chronic fatigue and immune dysfunction syndrome (CFIDS) and related illnesses, and they’re reporting a great deal of success. A newly released book, The Alternative Medicine Guide to Chronic Fatigue, Fibromyalgia & Environmental Illness, from Burton Goldberg, a prominent promoter of alternative medicine, includes case reports from “26 doctors [who] show you how they reverse these conditions with clinically proven alternative therapies.”
One of those doctors is Jesse Stoff, MD, of Soltice Clinical Associates in Tuscon, Ariz., whose comments and experience are used to “frame the book’s approach.” Dr. Stoff specializes in cancer and AIDS, along with CFIDS. The connection is the immune system. He explained his approach in a telephone interview with the Chronicle:
“Most doctors out there are looking for the causes of disease, if you will, from the point of view of pathology—in other words, the virus, the cancer cells, the bacteria. What I’m looking at is why this person got sick to begin with. Why were their defenses down? What were they deficient in? What were they toxic from? What were the stresses in their life that were suppressing their immune system that allowed this person to get sick? That’s the kind of thinking that goes on whether I’m dealing with Epstein-Barr virus, hepatitis C or malignant melanoma,” said Stoff.
“It’s basically a 180-degree difference in looking at the situation, because I’m asking the question why, not what.”
Help the body control virus
The idea is that correcting whatever was wrong that allowed the patient to become sick in the first place and supporting the immune system allows the body to right the situation and recover—to put a virus back into remission, for instance.
Typically, Dr. Stoff said, there is a virus involved in CFIDS, but it wasn’t necessarily the trigger to the whole cascade of disease symptoms.
“Most of us walk around with latent herpes viruses, but they’re held in check by our immune system. If that system gets depleted enough, stressed enough or toxic enough, our immune system is dysfunctional or depressed, and that lets the virus reactivate. So I’ll see patients who have been nutritionally deficient from something like anorexia, or someone who has destroyed their system from overexercise like an Olympic athlete, or somebody who has been exposed to toxins because of where they live or what they eat or drink, and what has happened, bottom line, is that their immune systems have become dysfunctional and they all have reactivated Epstein-Barr viruses.
“But if you think you’re going to put them on an antiviral drug and make it all go away, forget it. It doesn’t work like that.”
In The Alternative Medicine Guide to Chronic Fatigue, Fibromyalgia & Environmental Illness, Stoff is one of 50 doctors whose treatment strategies for chronic fatigue syndrome and “its close relatives, fibromyalgia and environmental illness,” are collected. The book’s publisher, Burton Goldberg, also publishes the Alternative Medicine Digest magazine, and the book is edited in the style of the magazine by the same editors.
The result is a well organized but dizzying array of treatment possiblities involving vitamins, minerals, other nutritional supplements, enzymes, hormone replacements, herbs and an assortment of things such as ozonated baths, bowel cleansing and the removal of mercury amalgam fillings from teeth.
The doctors interviewed for the book propose a broad range of possible “causes” for CFIDS, fromviral or parasitic infections to metal toxicity to hidden thyroid problems to allergies to enzyme and nutritional deficiencies. In each case, a variety of treatment approaches are discussed.
Many of the doctors interviewed in the book view the primary underlying problems in CFIDS as a buildup of toxins in the body and a depletion of the nutrients which the body’s systems, particularly the immune system and the digestive system, need to function properly. A particularly strong argument is made for mercury poisoning and the need to remove dental fillings containing mercury, a highly controversial treatment approach among dentists. Other problems that are discussed as possible causes or contributing factors to CFIDS are viruses, infections, candidiasis, parasites, hormonal imbalances or deficiencies (particularly DHEA, cortisol and ACTH), an underactive thyroid (which may appear normal on routine testing), and allergies.
The longest chapter in the book is devoted to the numerous tests these doctors may use to identify the multiple, “interlinking” causes for a patient’s particular symptoms.
Testing before treatment
Dr. Stoff stressed the importance of testing and of treating each patient as an individual.
“The pattern of blood testing I do is based on the symptoms and their evolution in that particular patient. Basically, my goal is to figure out what’s going on biochemically, endocrinologically and immunologically that’s getting this person in trouble to develop all these symptoms. The tests are different with each patient.”
For instance, Stephen Langer, MD, of Berkeley, Calif., a specialist in thyroid disorders, points out that a series of thyroid tests need to be run, rather than the single test most doctors order to evaluate the gland’s function. The thyroid requires hormones from the hypothalamus and the pituitary glands, as well as sufficient iodine and tyrosine to function properly. Some doctors suggest that an undetected thyroid problem may be the root cause of illness in as many as half of CFIDS patients.
Work with your doctor
That need for careful testing, said Dr. Stoff, means this is not a self-treatment book. Patients can’t order the blood tests and wouldn’t know which tests to order if they could. Rather, Dr. Stoff said, the book should be used as an introduction to the possibilities and as a resource for the patient and doctor in considering things they haven’t already done. He acknowledged that some of the treatments promoted in the book are beyond what he believes are appropriate. He doesn’t recommend removal of dental amalgams because “it’s a guess; I can’t do a test and tell the patients whether it might work.” Most of his patients who have had the procedure experience no effect on their health, he said. He also said he hasn’t found bowel cleansing to be a necessary procedure, although he said it needs to be considered in the context of a doctor’s overall approach with the patient. (Dr. Stoff described his personal approach to CFIDS in greater depth in his own book, Chronic Fatigue Syndrome: The Hidden Epidemic, Harper Collins, 2nd edition, 1992.)
Book lists resources
Throughout The Alternative Medicine Guide, as comments or case studies from different doctors are cited and as they report their recommendations for particular tests, supplements or herbs, the editors list on those same pages phone numbers and addresses for doctors and laboratories and sources for products. However, costs are not given.
Persons with CFIDS might be concerned that the editors use the terms “chronic fatigue” and “chronic fatigue syndrome” with virtually no regard for the accepted diagnostic criteria for CFS versus normal fatigue. One of the points the book makes about the alternative approach is that “alternative medicine physicians are less focused on getting a definitive diagnosis of CFIDS, aside from eliminating other disorders, than they are in gathering as much information as possible on the underlying causes that are producing the patient’s symptoms.”
For instance, the chapter on allergies includes a discussion of the Nambudripad Allergy Elimination Technique, developed by Dr. Devi Nambudripad in Buena Park, Calif., as well as environmental triggers for allergies, such as carpeting or indoor air polution. One full chapter discusses alternative treatments for depression and various approaches to reducing stress, addressing other psychologicalfactors that may be “obstacles to healing.”
Going for respect
“Our goal in this book and all our books is to report directly from the doctors, from the clinics with verifiable research and case studies,” said Sandra Weinstein, spokeswoman for the publisher. “Alternative medicine has had kind of a bad name up until now, but we really want people to know these are real MD doctors who are using these techniques. We really try to have everything grounded, based on research.”
This book is one in a series that grows out of Alternative Medicine: The Definitive Guide, first published in 1993, which collected the experiences of 380 doctors with alternative medicine practices in treating all kinds of illnesses. Fibromyalgia is not included, and one chapter addresses chronic fatigue.
The Alternative Medicine Guide to Chronic Fatigue, Fibromyalgia and Environmental Illness will make readers curious to learn more about many of the theories and treatments it discusses. Readers who recognize the controversial nature of many of the treatments will be left wishing there were more double-blind, placebo-controlled and peer-reviewed studies of these practices.
Still, as a sourcebook of alternative doctors who feel confident in their ability to treat these challenging illnesses and as an introduction to the range of therapies that may be employed, the book makes a valuable addition to a CFIDS patient’s library.
To contact Dr. Stoff
Dr. Jesse Stoff is medical director of Solstice Clinical Associates, Southwest Professional Plaza, 2122 N. Craycroft Road, #112, Tuscon, AZ 85712.
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