Below is the text of the letter that Dr. Philip R. Lee, then the U.S. Assistant Secretary for Health at HHS, wrote to the Washington Post, the Boston Globe, the Wall Street Journal and the New York Times following their coverage of the death of Judith Curren, a woman severely debilitated by CFIDS. Dr. Lee has since retired as the Asistant Secretary and is now with the Institute of Health Policy Studies at the University of California at San Francisco. Thanks to Richard Bozanich for getting this text onto the Internet.
September 13, 1996
Dear Editor:
There has been much said recently in the media about Chronic Fatigue Syndrome (CFS). A variety of characterizations have been made about the nature of CFS as a disease and about people who suffer from this disease.
Many of these characterizations have not been accurate and have presented a picture of CFS sufferers that is far from true. I would like to attempt to set the record straight and present some of the important facts about CFS.
First, and perhaps most importantly, CFS is a scientifically recognized disease syndrome. It is a disease entity that manifests itself cross the spectrum of symptoms, ranging from people being chronically tired to being wheelchair bound. It is a serious and legitimate diagnosis. It is not, as some have characterized it, some sort of psychological problem. Recovery is slow and uncertain for many clients.
Research on CFS presents special challenges because the causes and mechanisms of the multi-system disease are not yet understood. CFS, like many other diseases, shows no testable or detectable signs upon autopsy -- yet we know it exists.
To address these issues, scientists need to learn more about very complicated processes, such as immune dysfunction, reactivation of latent viruses and molecular interactions between the brain and the immune system.
To develop successful therapies, researchers need to identify specific abnormalities associated with the syndrome that are correctible.
The federal government recognizes these and other challenges associated with CFS. Several institutes at the National Institutes of Health support research into CFS. The Centers for Disease Control and Prevention have a significant effort under way to study the epidemiology of CFS, particularly its incidence and prevalence. The U.S. Public Health Service has administratively convened the Chronic Fatigue Syndrome Inter-Agency Coordinating Committee for the past several years in an effort to improve our approach to resolving the mysteries and dilemmas of CFS. In recognition of the gravity of the effects of CFS, we will be establishing a new Coordinating Committee through the issuance of a formal Secretarial charter.
Let me assure you that, although we have not yet been able to fully describe the basis for CFS, nor do we fully understand the mechanisms of CFS, it is very real and it is not a figment of anyone's imagination. CFS is devastating to many who have it.
Sincerely,
Philip R. Lee, M.D.
Assistant Secretary for Health