This article is reprinted with permission from The CFIDS Chronicle Vol. 10 No. 1, Winter 1997.
In this session, the only one open toall attendees which directly addressed the treatment and/or clinical management of CFS, five well-known CFS clinicians discussed how they treat CFS.
Charles W. Lapp, MD
Dr. Lapp, director of the Hunter-Hopkins Clinic in Charlotte, NC, has a multi-modal approach to the treatment of CFS which focuses on management of individual symptoms.
Headache: Headache control is important in Dr. Lapp’s approach. Some of the medicines he uses are Diamox, calcium channel blockers, analgesics, Midrin, Imitrex and neurontin.
Neurally Mediated Hypotension: Although Dr. Lapp has found that NMH occurs less frequently in his patients than the Johns Hopkins researchers reported in 1995, when patients test positive for it he treats the condition with Florinef and beta blockers.
Nutrient Repletion: Dr. Lapp finds low levels of magnesium sulfate DHEA and cortisol in many CFS patients and he uses supplements accordingly.
Investigational Drugs: Drugs being studied to treat CFS which Dr. Lapp uses include Kutapressin and IV gamma globulin. He is also optimistic about Ampligen.
Treating Perpetuating Factors: Certain overlapping conditions produce symptoms which make CFS patients even more miserable. Many of these can be successfully treated, thus managing at least part of a patient’s symptoms complex. Conditions which can occur with CFS and which must be treated if they are presented include: depression, anxiety, allergies, chemical sensitivities and yeast infections. Chronic illness can produce family, financial and other types of stress and Dr. Lapp recommends counseling to help patients deal with the ramifications of being ill.
Other Complications: Dr. Lapp anticipates that CFS patients are at increased risk for osteoporosis, due to the lack of weight=-bearing exercises that maintain bone density. Other problems that he is careful to screen for include cholesterol elevation and cancer.
In the question-and-answer session, which followed, Dr. Peter Manu mentioned that the FDA has issued an injunction against the long-term use of benzodiazipenes, such as Klonopin. Dr. Lapp replied that, in his experience, this drug is the most effective treatment for sleep disorders in CFS.
Mark O. Loveless, MD
Dr. Loveless, director of the division of infectious diseases at Oregon Health Sciences University, said that the ability of an infectious disease specialist to find the cause of CFS is extremely limited. This is because six months after a person gets sick (when a diagnosis of CFS can first be made, according to the case definition), there is a very slim chance that the agent which caused the illness lingers in the body. As a result, antibody tests for viruses done after a person is already sick have little value in figuring out what caused the illness or diagnosing the disease. Also, because infectious diseases are so common, it is difficult to show retrospectively that a particular agent or illness caused CFS.
CFS patients and doctors can be too quick to attribute all symptoms to CFS, even though patients might have other conditions in addition to CFS – ones which may be treatable or, on the other extreme, fatal. Dr. Loveless is careful to check out all of a patient’s symptoms and treat them appropriately.
He does not recommend the use of antibiotic or antiviral medicines unless tests show a clear infection. He does, however, vaccinate patients for flu and other infections. Until we have evidence that vaccines worsen CFS, it may be better administer them to avoid these illnesses, he said.
CFS appears to be a post-infectious syndrome, Dr. Loveless said, and he is optimistic that new molecular tests will be able to link a particular pathogen with CFS, possibly one which has yet to be discovered.
Nancy G. Klimas, MD
Dr. Klimas, director of the department of immunology at the University of Miami, echoed Dr. Loveless’s warning to carefully investigate CFS symptoms, especially at eh initial visit. The clinician must allocate enough time to each new patient to carefully review his or her entire medical record, conduct a thorough initial exam (including a neuro-cognitive assessment) and go over any medications, nutritional supplements, etc. the patient has taken.
This is vital because the initial visit is the time when other conditions are considered and/or ruled out. By focusing so much attention on the initial exam, Dr. Klimas has discovered that some “CFS” patients actually have multiple sclerosis, anemia or tumors. If they exist, these and other conditions must be treated properly.
Dr. Klimas’s CFS treatment includes teaching patients to pace themselves and to adapt and live within their limits, a technique called cognitive restructuring. She is careful to treat depression, sleep disorders. She also warned against taking daytime naps because they can disrupt sleeping patterns.
Drug interactions can be a problem because CFS patients tend to take a lot of prescription and non-prescription medicines (including nutritional supplements) in the hope that something will work. One dangerous combination which has recently emerged is taking Florinef and licorice root together, because patients hear that both products help neurally mediated hypotension and think that “more is better.” This is absolutely not the case, she said, because each increases the toxicity of the other. To avoid possible drug interaction problems, Dr. Klimas takes patients off all medicines and supplements before starting treatment.
Kenny DeMeirleir, MD, PhD
CFS treatment in Europe is very similar to that in the U.S., said Dr. DeMeirleir, a professor of medicine and physiology at Vrije University in Brussels, Belgium. He presented data on his recently completed 23-patient, open-label study of the experimental drug Ampligen.
Dr. DeMeirleir first reviewed a previous U.S. study of Ampligen in CFS in which the average patient’s Karnofsky score improved from 47 to 85 after 24 weeks on Ampligen.
In Dr. DeMeirleir’s study, 24 weeks on Ampligen improved average Karnofsky scores from 53 to 76. In addition, increases were seen in cognition, maximum oxygen uptake on bike ergometry and work output. Within three years, 15 of the 23 patients enrolled in this study resumed work.
David Klonoff, MD
Dr. Klonoff, an endocrinologist and clinical professor at the University of California at San Francisco’s School of Medicine, presented his non-pharmacological approach to CFS treatment.
It is essential for CFS patients to get some exercise to prevent deconditioning and muscle atrophy, he said. Muscle atrophy impairs performance, causing pessimism and disinterest in activity, which leads to negative effects on skeletal muscle and the cardiovascular system. In contrast, exertion produces muscle enlargement, increasing performance and optimism and encouraging the person to continue exercising.
Dr. Klonoff introduces exercise slowly, starting the first week with a five-minute walk each day, and increasing to 10 minutes in the third.
He encourages patients to adopt a hypoglycemic diet, avoiding sugar, alcohol and caffeine. He also mentioned that the nutritional supplement evening primrose oil has anti-inflammatory properties which may be helpful to CFS patients.
Dr. Klonoff gave a strong endorsement of professionally led support groups. Approximately 20 members of the group he leads were in the audience to demonstrate the positive impact of support groups on learning to cope with the stress of having a chronic illness. He believes that it is essential that support groups are led by trained professionals to keep the group “on task and moving in a positive direction,” rather than “wallowing in the experience of being sick.”
Support group leaders in the audience strongly objected to this statement, saying patient-led groups can be just as effective as those run by therapists; patients often can’t afford professionally run groups; and preventing patients from leading groups is yet another way of removing control from them.