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CFS: Primary Care
Chronic fatigue syndrome (CFS) remains a poorly understood and
underdiagnosed disease. Prevalence is estimated at 422/100,000; it is believed
that more than 855,000 adults in the United States have CFS. Yet research shows
that 84–90 percent of people who meet the 1994 International Research Case
Definition for CFS (see back page) remain undiagnosed.1
To help improve
awareness, diagnosis and treatment of CFS, The CFIDS Association of America and
the Illinois Area Health Education Centers Pro-gram have partnered with federal
agencies to create an education curriculum for primary care providers. The
curriculum, which was developed by national CFS experts, is now being offered
for Continuing Education (CE) credit. It is designed both as an introduction to
the disease and a treatment update for practitioners who already see CFS
patients. For more information, please contact Terri Lupton, Coordinator for
Educational Opportunities at the CFIDS Association, at
The following treatment overview is adapted from the new
People with CFS present with a
wide variety of primary symptoms. Providers should query patients about which
symptoms are of greatest concern to them and tailor the management plan
accordingly. Many CFS patients are extremely sensitive to medicines; providers
are advised to start with very low doses and increase gradually to tolerance
level. Therapeutic benefits may be achieved at lower than normal
Sleep Disturbances. Most people with CFS report
sleep disturbances. Disrupted sleep leads to increased fatigue, irritability and
muscle pain. Typical sleep disorders include difficulty falling asleep,
hypersomnia, frequent awakening, intense and vivid dreaming, restless legs,
periodic leg movements and nocturnal myoclonus. Most patients experience
non-restorative sleep, a feeling of profound fatigue, achiness and mental
“fogginess” that lasts 1–2 hours after rising.
Treatment is dependent on identification of the underlying sleep
disturbance and should be tailored to the patient with consultation by sleep
specialists. Simple sleep hygiene measures can be suggested, and
Pharmacologically, primary health care providers may wish to consider
simple antihistamines (like diphenhydramine) or over-the-counter sleep products
as initial therapy. Some physicians who specialize in the treatment of CFS have
found that clonazepam (0.5–1mg hs) to initiate sleep and low dose tricyclic or
tetracyclic antidepressants to help maintain sleep have been useful for patients
who have trouble both falling asleep and staying asleep. Examples are doxepin
(10–25mg), amitriptyline (10–25mg) or trazodone (50mg). The hypnotic drug
zolpidem (Ambien®) has been helpful for both sleep initiation and maintenance in
some patients with CFS. Zolpidem increases the depth of sleep (stages 3 and 4).
Note that users may adapt to the drug over time.
Benzodiazepines can be helpful, but are associated with unfavorable
characteristics such as habituation, adaptation and adverse effects on stages 3
and 4 sleep. A word of caution, as noted above: persons with CFS often do not
tolerate usual dosages of sedating medications. It is best to start with low
doses and increase as needed and tolerated.
Analgesics and/or non-steroidal anti-inflammatory drugs (NSAIDs) can be
used for relief of musculoskeletal pain or headache, and often benefit sleep as
well. Other medications to achieve improved sleep may be needed, and if sleep
problems persist, it is advisable that formal sleep studies and/or referral to a
sleep specialist be arranged.
Pain. CFS pain may be in muscles (sometimes
described as “deep pain”) or joints (arthralgias). Patients may also complain of
headaches (typically pressure-like), and allodynia, which is generalized
hyperalgesia or soreness of the skin to touch.
It is advisable to avoid narcotics whenever possible; therapy should
begin with simple analgesics like acetaminophen, aspirin or NSAIDs. Low doses of
tricyclic antidepressants can also be helpful in tempering muscle pain. A mild
narcotic like propoxyphene, or tramadol (Ultram®), which may be less habituating
and has the advantage of increasing serotonin as well, may be considered for
For persons with severe and chronic pain, long-acting narcotics (e.g., MS
Contin®, Oramorph® or fentanyl patches) have been effective in certain cases.
Persons with severe chronic pain should be advised to seek counseling on
adjunctive pain management techniques such as meditation, deep breathing,
biofeedback, gentle massage, physical therapy, etc. Short-acting narcotics
should be avoided (e.g., codeine, Demerol, Percocet) except in consultation with
Central activation. Studies suggest that CFS is
associated with decreased levels of the neurotransmitters serotonin and
dopamine. This leads to disrupted sleep, lowering of the pain threshold,
irritability and depressed mood. Low doses of serotonin re-uptake inhibitors or
dopamine agonists may be used. Some patients have experienced decreased fatigue
and improved cognition by using low doses of amphetamine-based stimulants
(Dexedrine, methylphenidate, phentermine). However, as with many treatments in
CFS, there have not been adequate controlled studies of these medications and
some controversy exists. Stimulants should be used only with the advice of a
psychiatrist or sleep expert who also follows the patient.
Depression. CFS is not a form of depression.
But as a result of the loss of functional abilities and changes in brain
chemistry, depression is a common symptom in persons with CFS and should be
treated when diagnosed. Providers must choose carefully when prescribing
antidepressants; these drugs include a variety of agents, each of which targets
various symptoms (e.g., those that target sleep disturbances include
amitriptyline and nefazodone).
Dysautonomias. Orthostatic intolerance, the
inability to maintain upright posture, is common in people with CFS. Types of
orthostatic intolerance seen in CFS include neurally mediated hypotension (NMH),
postural orthostatic tachycardic syndrome (POTS) and vasovagal
Orthostatic intolerance can be confirmed by tilt table testing, which is
available at most medical centers and should be performed in a hospital setting
only. This condition responds well to volume expansion and adrenergic blockage
in patients without CFS, but has been less effective in CFS patients with
abnormal tilt table responses. Usual therapy for diagnosed orthostatic
intolerance is increased fluid intake (64 oz. water per day) and dietary salt
(typically 2–6 additional grams daily), and the use of compression garments.
Fludrocortisone, midodrine (ProAmatine), beta-blockers and alpha agonists are
medication therapies that can be attempted if these simplistic measures don’t
provide adequate symptom benefits.
The clear goal of any management
plan is to optimize health. Address-ing patients’ individual needs through
supportive therapies will assist in optimizing function.
Diet. A prudent, well-balanced diet is the
foundation of good health. Some people with CFS report varying degrees of
intolerance to refined sugar, caffeine, alcohol and tobacco, all of which should
be minimized to promote optimum health.
Activity. CFS symptoms tend to worsen with
physical and/or mental activity, and a prolonged relapse can be triggered by
overexertion. CFS patients are best advised to balance gentle activity with
frequent rest periods.
Discourage excess rest and social withdrawal. Recommended activities
include stretching, light calisthenics, light weights (1–2 pounds), walking,
bicycling or swimming. Most patients will have to start with two- or
three-minute periods of exercise, interspersed with frequent rest periods. The
exercise should not make the individual tired. Careful planning of duration and
distance allows the patient to stop the activity before becoming tired. The
exercise duration is then increased very slowly over time, but may have to be
reduced or withheld temporarily during periods of relapse.
Counseling. A supportive counselor can help
patients cope with the prospects of
long-term illness, as well as family
issues, anxiety, depression, grief, anger and guilt. Cognitive behavioral
therapists are specifically trained to provide both the guidance and the support
that is helpful in CFS and other chronic illnesses, focusing on realistic goals,
symptom management and strengthening coping mechanisms. However, cognitive
behavior therapy is not a cure for CFS.
Debate still surrounds the prognosis of
CFS, and unfortunately there is insufficient data to accurately predict
long-term outcomes. Based on the limited research available, it appears that the
majority of patients with CFS improve within five years of becoming ill.
Improvements may be due to lessening of the severity of symptoms, adjustments in
lifestyle and/or compensatory behaviors. Even those patients who report recovery
indicate that some symptoms continue, albeit at a lower and less debilitating
Based on statistical data from the U.S. Centers for Disease Control and
Prevention (CDC), if symptoms last for five years it is unlikely that the
illness will improve significantly in subsequent years. However, improvement is
possible in any individual patient at any point in the course of the illness.
CFS is a complex illness with a myriad of
symptoms that are common to other diseases. Nevertheless, the process of sorting
through symptoms and assessing abnormalities (by a thorough history and
physical) is no different than clinical assessment of other illnesses. Like
other illnesses, CFS symptoms form a specific pattern that, when combined with
exclusionary laboratory tests, are diagnostic.
The challenge of diagnosing and managing CFS remains a formidable task
today, but the future is promising. Rigorous research is being conducted into
its causes and treatment, and a recent initiative by the CDC has provided
necessary support for further research and education of primary health care
providers. These efforts, combined with a growing grassroots patient advocacy
movement, provide hope for new breakthroughs in diagnosis and management of
1 Jason LA. “A community-based study of CFS.” Archives of
Internal Medicine. 159:2129-2136.
Adapted from “Chronic Fatigue Syndrome: A
Diagnostic & Management Challenge.” For more information, contact The CFIDS
Association of America at 704-365-2343.
disability: the doctor’s role
By definition, all patients with
CFS are debilitated and many are disabled. Most patients worked full time before
becoming ill. Studies show a substantially decreased number are able to maintain
full-time employment after the onset of CFS.
The application process for disability benefits is often protracted and
frustrating, and career-oriented individuals have difficulty accepting that they
may have to discontinue working and rely upon insurance companies and the
government for financial support. When a patient applies for disability
benefits, treating professionals are a major source of pertinent information.
The process of preparing letters or reports or filling out forms can be time
consuming, but may be streamlined by maintaining adequate documentation, keeping
detailed office notes and following an outline. Documentation should be as
complete and specific as possible.
Ongoing evaluation tools can supply useful data. The Hospital Anxiety and
Depression Scale (HADS), the Fisk Fatigue Impact Scale, the SF-36, a
patient-completed symptom checklist and the Subjective Functional Capacity
Assessment Tool are helpful in supplying documentation and providing information
for a report or letter. The assessment tool was created by Charles Lapp, MD, and
is available through The CFIDS Association of America.
Bell’s Disability Scale can be completed on the basis of your
observations along with patient input. This scale puts a “number” on the
individual’s degree of disability. It is preferable to the Karnofsky scale,
which is not particularly useful in CFS. When cognition is significantly
impaired, referral to a neuropsychologist for testing often yields supportive
data. Additional information on helping patients win disability claims is
available at www.cfids.org.