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Fall 2003

CFS: Patient Care Basics 

Flu vaccines: Balance risks against benefits
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 Center in Charlotte, 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 Hunter-Hopkins 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 develop immunity.”

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.

Other viewpoints
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.’”

Kasia Faryna

EBV titer: Limited value
In the 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 Control).

     
Exercise: Avoid boom/bust
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.

Consider alternative diagnosis
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.