Provided courtesy of Mary O'Connor, CompuServe Chronic Illness Forum.
Original Source: Congressional Record, May 12, 1995
This is testimony at a House and Senate Briefing sponsored by Representative John Edward Porter (R-IL) and Senator Harry Reid (D-NV). The Moderator was K. Kimberly Kenney, Executive Director, The CFIDS Association of America
Senator Reid, Congressman Porter, and Members of Congress: My name is Dr. Anthony Komaroff, and I am here today to thank you for the support you have given, through funding provided to the NIH and CDC, to foster research on Chronic Fatigue Syndrome, or CFS. I am a professor of medicine at Harvard Medical School, and direct one of the NIH-funded CFS Cooperative Research Centers. In my judgment, your support of CFS research has made possible important new discoveries about many facets of this illness. Let me briefly give you my view of what is new in CFS research.
The CFS Cooperative Research Centers have been a valuable adjunct to conventional R01 research grant funding. Currently, there are three funded Centers, and there has been a recent repeat competition for these awards. The Centers pull together scientists across a wide range of disciplines - virology, immunology, neurobiology, psychiatry, and epidemiology, to name a few. This is valuable, given the evidence I will summarize in a minute that indicates abnormalities of many different types in this illness. The Centers can pool their patients and data for certain studies, and meet together regularly at the NIH.
Let me try to highlight some areas of recent research. How common is CFS in the United States? Dr. Reeves has addressed that question, and studies in the community conducted by our NIH-funded center agree with the most recent estimates from the CDC study. These studies also are giving us a better picture of which Americans come down with this illness. The studies indicate that CFS is not, as some media commentators have suggested, an illness restricted to middle class or more affluent white women in their thirties. CFS also affects many men, and people from all socioeconomic groups and ethnic backgrounds. Perhaps the only segment of our society in which CFS appears less frequent is people of Asian background. To my knowledge, we still do not have good information on the prevalence of CFS in American children, but we and others have seen many children with this illness.
Patients with CFS frequently complain of problems with thinking and memory. Is there really anything wrong with the brain in CFS? Recent research indicates that there may be. A study conducted at the NIH found that patients with CFS had an unusual pattern of stress hormones produced in the brain, a pattern quite different from that seen in patients with depression or healthy individuals.
Magnetic resonance images, or MRI scans, of the brain have been conducted by several research groups, including ours. Every published study finds that abnormal-appearing areas in what is called the white matter of the brain are seen much more often in patients with CFS than in healthy people of the same age and gender.
Several studies employing another technique for taking a picture of the brain, called SPECT scanning, also reveal abnormalities in CFS. In one recent study, we compared SPECT scans in four groups of patients: those with CFS, AIDS, depression, and healthy individuals. The SPECT scans in the patients with CFS and AIDS showed significantly reduced blood flow, compared to patients with depression and healthy individuals.
Finally, computerized techniques for analyzing brain waves have recently been used to study patients with CFS. In a preliminary report, abnormal brain waves called sharp waves and spike waves were seen with dramatically greater frequency in patients with CFS than in patients with depression or in healthy subjects.
In the past several months, a team from Johns Hopkins has reported that they find abnormalities of the autonomic nervous system, which begins in the brain and sends nerves to all parts of the body. Our studies over the past two years have found similar abnormalities. So, there appears to be broad and growing evidence that there is something wrong in the brain of many patients with CFS.
Another important area of research involves the role of the immune system in CFS. Over the past several years, studies from laboratories all over the world have painted a picture of an immune system that is chronically turned on, chronically fighting. What the immune system is fighting remains unclear. Not all studies of the immune system in CFS come to precisely the same conclusion, but the preponderance of the published evidence in the scientific literature says the immune system in many patients is chronically activated. The important unanswered question is, why?
Finally, research continues in an attempt to find infectious agents, particularly viruses, that may be causes of CFS. This is a very reasonable possibility. As a doctor, I am very impressed by one simple, eloquent sentence I have heard from the lips of nearly 350 patients enrolled at our enter: "It all started with that virus." Previously healthy individuals describe how, one day, they became suddenly ill with what seemed to be a "virus" or "flu" - fever, sore throat, aching muscles, swollen glands, fatigue and other symptoms. But unlike any other flu they had ever had, they never got over this sudden illness and remain chronically debilitated. Not all patients with CFS say their illness began with a "virus," but most do.
What specific viruses might be involved? Here, we have a great deal to learn. One virus recently discovered at the NIH, called human herpesvirus-6, has been found in several studies to be actively reproducing itself more often in patients with CFS. It is plausible that this virus could be a cause of CFS, since it infects cells of the immune system and the brain. Very recently, research has been reported indicating that this virus not only infects brain cells in the test tube but is associated with actual brain diseases (although there is no evidence yet that this virus is associated with brain disorders in patients with CFS). Much more research is needed on this virus.
NIH-funded studies underway in Wisconsin are pursuing the possibility that a new human retrovirus, a virus in the same family as the AIDS virus, may be a cause of CFS. Previous studies of other alleged retroviruses in CFS were pursued vigorously by the CDC, and other groups, and were found not to stand the test of time. Studies from Britain have incriminated a family of viruses called enteroviruses in some cases of CFS. The virus that causes polio is in this family. However, here too the evidence is uncertain. It takes a lot of work to discover a new virus, and prove its role in a disease, and we are not there yet.
There are many other research studies that have been published and presented at international scientific meetings on CFS. For example, one line of research points to the possibility of abnormalities of energy metabolism in patients with CFS. Time does not permit even summarizing the majority of published research about CFS.
Let me close with this perspective on the last decade of research. A decade ago, public interest in CFS began to grow, but few physicians had heard of the illness, and there was practically no research underway. Today, nearly every doctor knows something about the illness and most have seen at least a few patients with it. There are hundreds of scientists all over the world studying CFS, nearly a thousand research papers published, and a great deal learned. This surge of interest and research would not have been possible without the efforts of the NIH and CDC, supported by Congress. Your support has galvanized CFS research in other countries and private funding for CFS research in the U.S. Do we have fundamental answers to the riddle of CFS? Unfortunately, not yet. But I think the research that has been done points us where to look for the fundamental answers. Thank you for your continued support.