How Nurses Can Help Patients Manage Chronic Fatigue Syndrome

By Debra Wood, RN, contributor

Oct. 29. 2009 - More than a million Americans suffer from chronic fatigue syndrome ― dealing with sleep, cognitive and physical symptoms that are often difficult to manage. While misperceptions have surrounded the disease, more health care professionals are beginning to recognize that they can help patients cope with the condition, manage symptoms and improve function and quality of life.

“Perceptions are changing,” said K. Kimberly McCleary, president and chief executive officer of the CFIDS Association of America, headquartered in Charlotte, N.C. “We’ve seen dismissal and disbelief give way to the need for tools. Health care professionals in the past said it was not real: a collection of symptoms or a name for something until we find what is really causing the problems. Now there seems to be recognition the patient is really sick.”
K. Kimberly McCleary
K. Kimberly McCleary indicates there are many ways nurses can help chronic fatigue patients cope with their illness.

Chronic fatigue syndrome (CFS), also known as chronic fatigue and immune deficiency syndrome (CFIDS), was first recognized about 25 years ago. Experts still do not know the cause. As recently as 2006, the Centers for Disease Control and Prevention (CDC) estimated that less than 20 percent of Americans with CFS have been diagnosed.

Profound exhaustion, poor stamina with post-exertional relapse, and difficulty with concentration, processing thoughts and short-term memory characterize the condition. Joint and muscle pain, unrefreshing sleep, tender lymph nodes, sore throat and headache may accompany the core symptoms, which can vary in severity.

“The most disabling symptoms are usually those that, if treated, can improve the whole symptom complex and function,” McCleary said.

Treatment often entails correcting sleep abnormalities, with behavioral management strategies and medications, such as amitriptyline or antihistamines.

“Most nurses understand if there is poor sleep, pain is worse, cognitive problems are worse,” McCleary said. “That becomes a cycle that is difficult for the patient to break.”

Some providers will prescribe Provigil or Ritalin to boost energy levels. Prescribers, typically, start with the lowest possible dose. But in addition to medications, patients must adjust their lifestyles and learn to pace activities. They also need emotional support, even professional counseling.

“Nurses play an important role in the care of patients, in the inpatient and outpatient settings,” McCleary said. “Nurses have a mindset oriented to patients’ needs, beyond the prescriptions that need to be written, and they can be important links in a health care system that doesn’t always serve chronically ill patients as well as it should.”

Three forms of chronic fatigue exist: a sudden-onset, post-viral condition; a remitting-relapsing form; and a severely ill or progressive type. About one-quarter of patients receive disability benefits, and others may work part time in less-demanding positions than they once held.
Suzanne D. Vernon, Ph.D.
Suzanne D. Vernon, Ph.D., said nurses can help patients receive an earlier diagnosis, which might improve outcomes.

“It’s important to get people diagnosed earlier,” said Suzanne D. Vernon, Ph.D., scientific director of the CFIDS Association of America. “Data shows if a person with CFS is diagnosed early, once they meet the case definition, which is six months or longer, the likelihood of recovering from the illness is greater than if it goes beyond two to five years.”

Current Research, Tools and Awareness Efforts

The CFIDS Association of America, together with the CDC, created a national public health education campaign called Spark! to increase understanding of CFS among individuals experiencing symptoms of the illness, the general public and health care professionals. The campaign includes a national traveling photo exhibit called The Faces of Chronic Fatigue Syndrome.

Along with the campaign, the CFIDS Association has developed several free resources for nurses and other health care professionals, including a 12-page CFS Toolkit, a two-hour self-study course, a quick-reference brochure and several CFS-related articles, all available for download from the CFIDS web site.

Research continues in an attempt to find a cause for CFS, a test to help diagnose the disease, and better approaches to treating the illness.

In October 2009, a team from the Whittemore Peterson Institute at the University of Nevada, Reno; the National Cancer Institute, part of the National Institutes of Health; and the Cleveland Clinic in Ohio announced a potential retroviral link to chronic fatigue syndrome, after discovering the xenotropic murine-related retrovirus was present in 67 percent of a specific group of long-term CFS patients with cognitive deficits but in only 8 percent of the healthy controls.

Vernon describes this as a possibly “game-changing scientific event,” if the data can be replicated, since it could help as a diagnostic tool.

“It clearly shows an indisputable biologic basis for describing the immune dysfunction in CFS,” Vernon said.

In addition, the CFIDS Association is funding research to better understand the association between CFS and Epstein-Barr virus. The viral infection may possibly be a triggering event. Another study is researching a marker present after CFS patients exercise.

“There is hope,” McCleary said. “There are things that help to give patients a foothold in trying to get their function and daily life improved, while the science continues looking for better answers.”