AHMF Advocacy Package

Letter: Dr Philip Lee

The following is the text of the letter Dr Philip Lee, Assistant Secretary for Health at HHS, USA wrote to the Washington Post, Boston Globe, Wall Street Journal, and New York Times following their skewed coverage of Judith Curren's death.

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 across 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 machanisms of the multi-system disease are not understood. CFS, like many other diseases, shows no testable or detectable sigsn 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 underway to study the epidemiology of CFS, particularly its incidence and prevalence. The U.S. Public Health service has administratively convened the Chronic Fatigue Syndrome Interagency 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, MD
Assistant Secretary for Health


Dr Philip Lee, former Chair of Congrassional Committee CFIDSIACC
Chronic Fatigue Immune Dysfunction Syndrome Interagency Coordinating Committee–CFIDSIACC
Committee: representatives of National Institute of Health Centers for Disease Control
Representative Researchers, Clinicians and Consumers

 

Return to Top

Alison Hunter Memorial Foundation
PO Box 6132 North Sydney 2059 Australia
Phone/Fax +61 2 9958 6285

Home
About Us
About ME/CFS
Severity
Advocacy
Research
Guidelines
Conferences
Medical Politics
Media
Archives
Links
Donations