Overcoming Chronic Fatigue -- Full-Length Doctor's Interview

Ivanhoe Broadcast News Transcript with
Barry Hurwitz, Ph.D., Professor of Psychology and Biomedical Engineering,
University of Miami, Miami, Florida,
TOPIC: Overcoming Chronic Fatigue

Do we know what causes chronic fatigue syndrome?

Dr. Hurwitz: No. The cause is unknown. There are many important clues, and we’re learning more and more as a consequence of this study and other studies around the country. But we don’t know yet what the cause is.

There is a stigma that some doctors dismiss chronic fatigue syndrome. Is it challenging to diagnose?

Dr. Hurwitz: Yes. It’s very difficult to diagnose it. You diagnose it by elimination of other potential ailments, and as a consequence, many individuals are misdiagnosed or undiagnosed. Today, about 1.3 million people in the United States have chronic fatigue syndrome. It’s more prevalent than multiple sclerosis, for example. It’s four-times more prevalent than multiple sclerosis and eight-times more prevalent than lupus. But 85 percent to 90 percent of the people who have chronic fatigue are undiagnosed. They’re living with a disease. They don’t realize they have this, what the reasons for this persistent and severe fatigue and relapsing. Sometimes they feel better, and sometimes they don’t. They just don’t understand what’s going on, and they’re pulling up their socks trying to make do, but they really have a problem. There’s a physical basis for this problem. Unfortunately, in today’s medical environment, physicians don’t have a treatment for it, so there’s not much that can be offered at this time, which is the reason for this study.

How do you come up with the number of 85 percent to 90 percent of the people go undiagnosed?

Dr. Hurwitz: There was a study done by Dr. Jason in Chicago, and what they did was telephone individuals and screen them over the phone. They interviewed them to see whether or not they might be individuals who have chronic fatigue syndrome, brought them in, and then diagnose them properly, and on the basis of that discovered that only 10 percent of the people that they randomly called were diagnosed, 10 percent of the people who had chronic fatigue were diagnosed with chronic fatigue, and the remaining 90 percent who they subsequently diagnosed with chronic fatigue were undiagnosed previously.

Does this misunderstanding about the diagnosis of CFS affect your study at all?

Dr. Hurwitz: Well, it makes it difficult for us to get the word out. It’s difficult to identify individuals who have chronic fatigue because people just don’t realize they have it. There aren’t very many clinics available. We have an excellent clinic here. There’s one run by co-principal investigator Dr. Nancy Klimus and she is probably one of the most internationally renowned individuals in this field.

Are you saying there are not a lot of clinics out there that diagnose chronic fatigue syndrome?

Dr. Hurwitz: Right. There are very few clinics around the United States who diagnose this problem. There are some in the major metropolitan areas, but awareness of the disease and disorder is occurring and increasing and national agencies are beginning to increase funding for research in this area and important clues are being brought forward as a consequence of this research.

Why do you think some doctors are so critical of CFS?

Dr. Hurwitz: Well, the symptomotology is very similar to flu and flu-like conditions and similar to other conditions, some of which have a psychological origin. For example, depression has similar types of symptoms such as fatigue and muscle pain and the relapsing nature of it. Chronic fatigue is often misdiagnosed as a psychological condition, and the consequence is that the medical field has, in general, a very poor history with respect to this disease. Many people with this have been diagnosed as having a psychological problem when, in actuality, there is more to it than that, and there’s clearly a physical basis for this disease.

Give me an overview of your study in laymen’s terms.

Dr. Hurwitz: We discovered that people who have chronic fatigue syndrome have decreased volume of red blood cells. As a consequence, we are attempting to examine whether the drug Procrit will increase the number of red blood cells that these individuals have and improve their fatigue symptoms. So, we are enrolling about 150 men and women who have chronic fatigue, who have been diagnosed with this persistent fatigue that is severe and relapsing and is greater than six months of duration. Then, when they’re enrolled in the study, they’re assigned to the treatment conditions in which they receive the Procrit drug or they’re assigned to the control condition where they receive a substance that is not the drug but is called the placebo.

Explain how you think Procrit should work.

Dr. Hurwitz: Procrit is a drug that was created to emulate a normal hormone that is released from the kidney. This hormone acts on the bone marrow and affects the bone marrow to produce red blood cells. People who have chemotherapy due to their cancer or individuals who are on hemodialysis, because of their kidney failure, have tendencies to have decreased volumes of red blood cells. So this drug was created to treat these individuals. Now, what we’ve found is that individuals who have chronic fatigue syndrome typically have an inability to sustain an upright posture. They feel faint under physical challenge or even mental challenge, and of course, their fatigue, as a consequence of this energetic expenditure, lasts for days and days. But, oftentimes they find that they become faint during these activities, and it was thought that perhaps there was a blood regulation problem -- an inability to provide enough blood flow to the brain. So in investigating this, we looked at their red blood cell volume and discovered that about 80 percent of the women who have chronic fatigue syndrome and about 60 percent of the men have decreased volume of red blood cells. And, so consequently, we thought this drug, Procrit, would help these individuals. Because the red blood cell transports oxygen and glucose to the cells, it’s vitally important in providing the nutrients. Without it, we feel fatigued, and so consequently, and very simply, we felt that if we treated this condition, perhaps we could decrease the fatigue and remedy the problem, at least in part.

Is Procrit working? What have you found?

Dr. Hurwitz: It’s too early to tell right now. We’re still in the middle of the study. Some people have shown remarkable improvement and have gone back to work, and in others it's been less effective. But in all cases, we’ve been able to increase their red blood cell volume so the drug is effective. What it’s enabling us to do by understanding whom it works for and whom it doesn’t work for, we’re able to understand more about the underlying causes of the disease. We’re not only doing this treatment, but we’re giving a comprehensive cardiovascular workup so we can assess the functioning of the heart in relation to its ability to perform under different circumstances, as well as looking at whether the immune system is involved, because for many people, the immune system appears to be abnormal. It appears to be activated and as if the individuals were fighting some infection, but no infection has been found to be the cause of chronic fatigue syndrome. So, it turns out there is an immune system hormone or substance that’s released that actually causes the red blood cell volume to be depressed. That is, it stops the bone marrow from producing red blood cells. So, we’re looking at this link.

Is the misdiagnosis of CFS and getting Procrit going to create a problem with insurance companies?

Dr. Hurwitz: I don’t know if it’s going to create a problem. If, indeed, these results show that there is a deficit in red blood cell volume in chronic fatigue syndrome, then I think the insurance companies will have to provide support for this type of treatment for these individuals. At this point, there is no accepted treatment and so consequently, it is very difficult for people with chronic fatigue syndrome to get support from their insurance companies.

Are there any negative side effects from Procrit?

Dr. Hurwitz: No. There have been no adverse events related to the Procrit administration, and this is a drug that has to be very carefully administered and monitored by the physician.

This article was reported by Ivanhoe.com, who offers Medical Alerts by e-mail every day of the week. To subscribe, go to: http://www.ivanhoe.com/newsalert/.

END OF INTERVIEW

This information is intended for additional research purposes only. It is not to be used as a prescription or advice from Ivanhoe Broadcast News, Inc., or any medical professional interviewed. Ivanhoe Broadcast News, Inc., assumes no responsibility for the depth or accuracy of physician statements. Procedures or medicines apply to different people and medical factors; always consult your physician on medical matters.

If you would like more information, please contact:

Alex Gonzalez
University of Miami
Behavioral Medicine Research Center
1201 NW 16th Street
Miami, FL 33125
(305) 575-7154