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CFS: Patient Care
Flu vaccines: Balance risks against
Care management for patients with chronic fatigue
syndrome (CFS) presents unique issues
for both providers and patients. Due to
the lack of published data on various treatments, patients are approached on an
individual basis and care management decisions are often tested by trial and
error. When a patient inquires about annual influenza vaccination, therefore, it
is important to balance the potential benefits against concerns that the
inoculation will exacerbate CFS symptoms.
Charles Lapp, MD, director of the Hunter-Hopkins
N.C., says that his clinical experience with
thousands of CFS patients suggests that relapse or worsening of symptoms often
follows the shot. Based on his own observation, the
Center generally does not recommend
that patients with CFS receive the vaccine.
“Not only do some patients relapse after the flu vaccination,
many do not develop antibodies to the vaccination,” Dr. Lapp says. “Thus, you
may suffer the discomfort of a shot plus the misery of a relapse, and not even
However, Dr. Lapp does acknowledge two exceptions to his rule:
if the patient has taken the vaccine and tolerated it, or if the patient has a
serious chronic illness (such as emphysema, diabetes, or heart disease) in
addition to CFS.
Many clinicians share Dr. Lapp’s
views about the judicious use of influ-enza vaccinations. “I think the benefits
outweigh the risks because the effects of true influ-enza for CFS patients are
devastating and may last a long time,” says Joseph F. John, MD. “There may be
some downside from the vaccine but it really has not been studied. That would
make a good project.”
Charles Shepherd, MD, says his clinical experience shows that
a substantial percentage of his patients experience mild to moderate relapse
episodes following inoculation.
Dr. Shepherd says it remains impossible to determine exactly
which patients are more likely to suffer an adverse reaction to the vaccine. But
his experience shows that CFS patients with ongoing infective-type symptoms such
as sore throats and enlarged glands fare worse than others, as do those who have
recently developed CFS.
Internist Alan Pocinki, MD, says that many CFS patients appear
to have greater viral resistance. “Most patients fall into the ‘As sick as I am,
I hardly ever get a cold’ group, and it appears that some of the antiviral part
of their immune system is upregulated. For them I think the risks of an adverse
reaction to the shot outweighs the potential benefit, unless they are at high
risk for some other reason, e.g., volunteer in a nursing home.
“Others who get frequent colds or bronchitis, smoke or have
asthma probably should get it. I know there are people in the CFS community
strongly for or against vaccinations in general, but I’m in the ‘every patient
is different camp.’”
EBV titer: Limited value
mid-1980s, several researchers reported slightly higher levels of antibodies to
Epstein-Barr virus (EBV) in patients with CFIDS-like symptoms compared with
healthy individuals. Subsequent investigations showed that ele-vated EBV titers
are not diagnostic for CFS.
It is inappropriate to initially test for antibodies to EBV in
people with CFS symptoms even though EBV can be associated with a prolonged
infection that has all the features of CFS. Diag-nosis requires a complete
clinical evaluation and cannot be accomplished by merely testing for antibodies.
Since 95 percent of adults have been infected with EBV, most adults will show
antibodies to EBV from infection years earlier. High or elevated antibody levels
may be present for years and are not diagnostic of recent infection. Studies
have shown that EBV antibodies can be present in 20 percent of healthy
individuals for years so this is not always definitive (U.S. Centers for Disease
CFS symptoms tend to worsen with physical and/or
mental activity, and a prolonged relapse can be triggered by overexertion.
Exercise and activity plans must be highly individualized. CFS patients are best
advised to balance gentle activity with frequent rest periods. The primary care
provider can discuss the benefits of activity and the adverse effects of
deconditioning and assist the patient in setting realistic goals to optimize
physical conditioning. The provider can also tactfully dis-courage excess rest
and social withdrawal.
Recommended activities include stretching, light calisthenics,
light weights (1–2 pounds), walking, bicycling or swimming. Most patients can
start with 2- or 3-minute periods of such activities interspersed with frequent
rest periods. Finding the correct balance is a trial and error process, but it
is impor-tant that activity levels are stabilized to prevent the “boom or bust”
cycles that are common for CFS patients. Careful planning of duration and
distance allows the patient to stop the activity before becoming overexerted.
The exercise duration is then increased very slowly over time, but may have to
be reduced or withheld temporarily during periods of relapse. It may be
practical to consult a physical therapist experienced in treating CFS patients
who are severely incapacitated.
If the patient has had more than six months of
fatigue and indicates that it has not had a major effect on activities of daily
living, then the patient should be diagnosed with non-syndromic chronic fatigue.
Symptomatic and supportive treatment with periodic follow-up is appropriate.
Note that the treatment of CFS and non-syndromic chronic fatigue does not
differ. Crucial to clinical care of patients with CFS and other unexplained
fatiguing illnesses is continued interest and evaluation by the health care
provider. The provider should remain vigilant about other possible conditions
that may not be apparent at first.
Material for this section is adapted from “Chronic Fatigue
Syndrome: A Diagnostic & Manage-ment Challenge,” a self-study CFS course
offered for continuing education (CE) credit to health care providers.