By Gloria Furst, OTR/L MPH,
University of Miami,
and Paul Levine, MD,
George Washington University
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
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.
Basic Science Panel
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.
Following 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
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 (COI)
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 peri-pheral
edema and arrhythmia.
Midodrine seems to be more effective than Florinef for the treatment of
COI 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.
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 hypo-thyroidism, 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.
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.
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:
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
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.
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.
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.
The Think Tank's conclusions were presented to a standing-room-only
crowd of CFS patients
and interested observers on March 18, and will be submitted to a peer-review journal for publication.
Organizers plan to make this meeting an annual event, and hope that their efforts will translate into
improved patient care.
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.