A self-management study for Chronic Fatigue Syndrome, or CFS, that is receiving a grant of approximately $600,000 from the National Institute of Health is lead by Dr. Fred Friedberg, who is a research associate professor in the Applied Behavioral Medicine Research Institute at Stony Brook University.
The project, titled “Efficacy of Home-Based Self-Management for Chronic Fatigue”, focuses on establishing a cost effective program in which patients with CFS can apply individualized, ability-based treatments to help themselves feel and function better.
Chronic Fatigue Syndrome is a medically unexplained illness. Dr. Friedberg said in an interview that this means “We’re not really sure what causes it, and there is no definitive test for it.” However, there is consensus about several of its symptoms, such as six months of persistent fatigue not alleviated by sleep or exercise, headaches, flu-like symptoms and post-exertional malaise.
According to Dr. Friedberg this last symptom, meaning prolonged and/or delayed exhaustion after performing an activity, has been under-emphasized in the past, and may, in fact, be one of the illness’ defining characteristics.
Besides the substantial physical limitations caused by the illness, which may lead to the inability to hold a job, another frustration of patients with CFS is the skepticism of family, friends and doctors alike. “People are often treated dismissively by doctors, and so there is little help available to them.”
Dr. Friedberg clarifies that patients suffering from these symptoms often do not “look sick.” They may have their lab tests come back normal, resulting in doctors telling them that they are healthy. “If the doctor says you’re OK, everyone believes that you’re OK.”
Additionally, patients with CFS are often told by others that a simple change in diet, or attitude will reverse the symptoms. These types of advice are rarely helpful.
The tendency to disbelieve or blame the patient for his or her suffering is one of the reasons why Dr. Friedberg’s study is so important now. The fact that the program is purely self-management sets it apart from other related studies. Based on a recent survey of CFS patients, it was clear that a large number desired this kind of self-applicable treatment.
“People who are home-bound usually have their own schedule,” Dr. Friedberg noted, “They don’t want to try something that may flare their symptoms.”
This is where the convenience of a home-based treatment is helpful.
Some of the treatments in the program are “active relaxation, to help with managing stress and symptom relief, pacing activities to keep patients from doing too much or too little, and low-level activities, which may include leisurely walks of 30 seconds to five minutes.”
The idea is to begin at a level that will not exacerbate the symptoms and gradually move on to higher levels of activity. Dr. Friedberg believes that this process the will help “to develop a tolerance of activity.”
If the the program is successful, he hopes to make the treatment more available to doctors and insurance companies, who might cover the program.
Dr. Friedberg welcomes anybody who wishes to contact him about his study; he can be reached at 631-632-8252.
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