Although there is a large body of scientific research on chronic fatigue syndrome (CFS), these findings are rarely accessible to the practicing clinician. To address this problem, a think tank was held March 16-18 in Reno, Nev., near Incline Village, where the well-publicized 1984-85 outbreak of CFS occurred.
Eighteen CFS researchers and clinicians participated on two panels to examine rehabilitation strategies and basic science findings and make recommendations about what and how knowledge about CFS could be applied by clinicians to help patients.
Noted CSF 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 CFS 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 CFS 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 CFS 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 CFS 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 CFS patients.
Autonomic dysfunction. Chronic orthostatic intolerance (COl) should always be considered in CFS patients. Tachycardia is a more significant problem than low blood pressure. A tilt table test is optional, based on the presence of clinical signs, such as peripheral edema and arrhythmia. Midodrine seems to be more effective than Florinef for the treatment of COT in CFS. Non-pharmacological treatments, such as increased water and salt, support hose and caution upon standing, should be offered.
RNase-L testing. The ratio of the 37 kDa to 80 kDa RNase-L is reported to correspond to a patient’s clinical status and can be used as an objective marker of function. This test seems to identify a subset of CFS patients—it identified 80% of patients who met the 1988 case definition, but only 40% of those who met the 1994 definition.
Immune testing. Immune tests can be used to rule out other diagnoses and can suggest a diagnosis of CFS (i.e., low natural killer cell function, activated immune complexes). They can also be used as objective markers of illness to support disability claims.
Infectious agents.CFS 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 CFS 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 CFS.
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 CFS. Endocrine system. The endocrine system should be worked-up to exclude hypothyroidism, Addison’s disease and other illnesses with similar symptoms.
Cortisol is low in CFS patients, but research has not supported the general use of treatment with cortisol, thyroid hormone or growth hormone in CFS. Research priorities. CFS comprises a heterogeneous population. Researchers should stratify their populations, based on onset, gender, age, illness duration, co-morbid depression, immune status, etc., because findings from one subset of CFS patients may not apply to another group.
Multi-center, longitudinal studies should be initiated to learn more about CFS, especially natural history, pathogenesis, clinical markers, effectiveness of common interventions and other factors. Increased availability of grants would draw new investigators to CFS research and improve the quantity and quality of CFS science. Neuroimaging was cited as an important area of research and panelists expressed support for a CFIDS Association initiative to examine this area in closer detail.
General clinical guidelines. Primary care providers should be trained how to take care of CFS patients, including supporting their disability claims when warranted. CFS patients should not donate blood, as it may exacerbate symptoms due to low blood volume. CFS 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 CFS patients that are not well-known by CFS practitioners or rehabilitation professionals. Some of the findings discussed included:
Practical goals.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.
Exercise.CFS 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 CFS patients, so activity must be very carefully graded, extremely gentle and geared toward improving function.
Fatigue management.CFS 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 CFS patients’ daily performance.
Lack of information.Primary care practitioners may not realize that CFS patients can benefit from rehabilitation. For example, it is not well known that speech therapy can help treat CFS patients’ cognitive dysfunction, such as word-finding, memory and information processing deficits.
Early intervention. 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 CFS patients and the best ways of improving CFS 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, CFS 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, CFS 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 _CFS 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.