Chronic Fatigue Syndrome Research Think Tank Offers Advice to Clinicians and Patients
Although there is a large body of scientific research on chronic fatigue syndrome, these findings are rarely accessible to the practicing clinician. To address this problem, a think tank was held March 16-18, 2000 in Reno, Nev., near Incline Village, where the well-publicized 1984-85 outbreak of Chronic Fatigue Syndrome occurred.
Eighteen Chronic Fatigue Syndrome researchers and clinicians participated on two panels to examine rehabilitation strategies and basic science findings and make recommendations about what and how knowledge about Chronic Fatigue Syndrome could be applied by clinicians to help patients.
Noted Chronic Fatigue Syndrome researcher Nancy Klimas, MD, of the University of Miami, chaired the Basic Science Panel, which evaluated what lessons from scientific research and common clinical practice can be applied to the care of Chronic Fatigue Syndrome patients.
What follows are some of the recommendations made: Sleep. Fragmented sleep (periods of wakefulness throughout the sleep period) and lack of deep-stage sleep are very common in Chronic Fatigue Syndrome patients. True insomnia (inability to fall asleep) is uncommon, although patients may have delayed sleep onset because of a disrupted circadian rhythm.
Referral to a sleep clinic is only indicated if a Chronic Fatigue Syndrome patient has another type of sleep disorder; the clinician should use a good sleep questionnaire (such as the Pittsburgh Sleep Quality Index) to determine whether this is the case. Some medications commonly used in Chronic Fatigue Syndrome treatment, including Klonopin, Flexeril and SSRIs (most notably Prozac) may actually worsen sleep fragmentation. Tricyclic antidepressants and behavioral management (warm baths, standard bed-times, etc.) are helpful sleep treatments in Chronic Fatigue Syndrome patients.
Immune tests can be used to rule out other diagnoses and can suggest a diagnosis of Chronic Fatigue Syndrome (i.e., low natural killer cell function, activated immune complexes). They can also be used as objective markers of illness to support disability claims.
Chronic Fatigue Syndrome can be triggered by many infectious agents but human herpesvirus-6 (HHV-6) seems to have a more persistent detrimental effect in many patients. Testing for HHV-6 is optional, but if it is found, the clinician’s best course of action is to refer the patient to an infectious disease specialist for further evaluation. The panel agreed that Chronic Fatigue Syndrome patients should not be widely tested or treated for mycoplasma until after the completion of the large Veterans Administration study of mycoplasma in Gulf War illness, which is very similar to Chronic Fatigue Syndrome.
The panel also expressed concern over the recommended treatment for mycoplasma, which could produce antibiotic-resistant bacteria, causing further problems for patients. Epstein-Barr virus tests appear to be of no clinical value in the diagnosis or management of Chronic Fatigue Syndrome. Endocrine system. The endocrine system should be worked-up to exclude hypothyroidism, Addison’s disease and other illnesses with similar symptoms.
General clinical guidelines
Primary care providers should be trained how to take care of Chronic Fatigue Syndrome patients, including supporting their disability claims when warranted. Chronic Fatigue Syndrome patients should not donate blood, as it may exacerbate symptoms due to low blood volume. Chronic Fatigue Syndrome patients should generally not be offered live vaccines because of risk of relapse.
Rehabilitation Panel: Gloria Furst, OTR/L MPH, occupational therapy consultant from the National Institutes of Health (NIH), served as chairperson of the Rehabilitation Panel. The panel members presented and discussed strategies to help Chronic Fatigue Syndrome patients that are not well-known by Chronic Fatigue Syndrome practitioners or rehabilitation professionals. Some of the findings discussed included practical goals for therapeutic interventions and symptom management. The role of exercise and periods of rest in fatigue managment was discussed, in addition to the problem of a general lack of information about Chronic Fatigue Syndrome, and the benefits of early intervention when a diagnosis is made.
Therapy should be geared to a patient’s daily living needs, such as doing laundry or preparing food. The overall goal should be to improve the patient’s function. At the start of treatment, the patient and the therapist should work together to develop realistic social, academic, work and physical goals.
One of these goals should be participation in an enjoyable activity on a regular basis. Young people should be encouraged to attend school part-time as able so their social development doesn’t suffer.
Chronic Fatigue Syndrome patients have unique medical issues that do not always benefit from (and may be harmed by) traditional physical therapies. Normal exercise programs often provoke a relapse in Chronic Fatigue Syndrome patients, so activity must be very carefully graded, extremely gentle and geared toward improving function.
Chronic Fatigue Syndrome patients need to learn to set priorities, balance rest and physical activity, and use adaptive equipment or new methods of doing things. These management strategies can improve Chronic Fatigue Syndrome patients’ daily performance.
Lack of information
Primary care practitioners may not realize that Chronic Fatigue Syndrome patients can benefit from rehabilitation. For example, it is not well known that speech therapy can help treat Chronic Fatigue Syndrome patients’ cognitive dysfunction, such as word-finding, memory and information processing deficits.
Rehabilitation strategies are most successful when they are initiated early in the illness. Early intervention can minimize some of the negative biological consequences of having a chronic illness. The Rehabilitation panel plans to prepare a manual for health care professionals to educate them about the unique needs of Chronic Fatigue Syndrome patients and the best ways of improving Chronic Fatigue Syndrome patients’ function.
BASIC SCIENCE PANEL Roseanne Armitage, PhD, University of Texas Robert Fredericks, MD, Reno, Nev. Nancy Klimas, MD (Chair), University of Miami Robert Suhadolnik, PhD, Temple University Paul Levine, MD, George Washington University Lea Rhodes, Chronic Fatigue Syndrome patient, Truckee, Calif. Stanley Schwartz, MD, Tulsa, OkIa. Juluan Stewart, MD, New York Medical College William Torch, MD, Reno, Nev.
REHABILITATION PANEL Gloria Furst, OTR/L, MPH (Chair) National Institutes of Health Gerald Kennedy, Chronic Fatigue Syndrome patient, Truckee, Calif. Sharon Moss, PhD, CCC-SLF, BC-NC, American-Speech-Language-and Hearing Association Katharine Rowe, MD, University of Melbourne, Australia Karen Schmallng, PhD, University of Washington Sue Ann Sisto, PhD, PT, Kessler Medical Rehabilitation Hospital and University of Medicine and Dentistry of New Jersey Staci Stevens, MA, Workwell Physiology Services Inc. Donald Uslan, PhD, University of Washington
Ms. Furst is Occupational Therapy Consultant with the NIH. Dr Klimas is Professor of Medicine, University of Miami and Dr Levine is Clinical Professor of Epidemiology and Biostatistics, The George Washington University School of Public Health and Public Health Services. This article appeared in the _Chronic Fatigue Syndrome Research Review_, Spring 2000, Vol. 1 Issue 2, a quarterly newsletter of the CFIDS Association of America. PO Box 220398, Charlotte, NC 28210. (704) 365-2343, and is copyright 2000 by the CFIDS Association of America.