I am honored to receive the Rudy Perpich Award Particularly because Governor Perpich was a great public servant and CFS advocate and because the first recipient was my Stanford Medical school class mate, Dr. Alexis Shelokov. Sorry I can't be here Sunday with family.
In accepting this award, I want to acknowledge particularly the contributions of five individuals to my education: Dr. Shekolov, whose contributions to our understanding of chronic fatigue syndrome extend over more than 40 years; to Dr. Jay Levy of UCSF who has been an innovative and courageous investigator, not only of chronic fatigue but of HIV/AIDS; Elizabeth Roberts, a dear friend and one who has educated me about Chronic Fatigue Syndrome from a patient's perspective of the past 20 years; and Jan Montgomery and Marya Grambs for engaging me in CFS policy 10 years ago when I was president of the San Francisco Health Commission.
I also want to take this opportunity to express myself on an issue that you will be considering at a forum on Monday evening - the change of the name of chronic fatigue syndrome. It is time for a change.
Chronic Fatigue Syndrome, Wedner tells us, is neither a disease nor a syndrome. It is a committee definition. My own experience with CFS probably began in the 1950's. I was a fellow at the Mayo Clinic in 1953-1955. One of my most common diagnoses was clinical nervous exhaustion - was some of it CFS? The 1988 working case definition of Chronic Fatigue Syndrome was an important step in facilitating prevalence surveys but it did not differentiate CFS from other types of chronic fatigue.
In 1993, CDC convened the International Chronic Fatigue Syndrome Study Group, which developed a revised definition of Chronic Fatigue Syndrome. Chronic Fatigue Syndrome was defined as self-reported persistent or relapsing fatigue lasting six or more consecutive months. In addition, four or more of the following symptoms must be currently present:
impaired memory or concentration;
tender cervical or axillary lymph nodes;
multiple joint pains;
unrefreshing sleep; and
During the past decade there have been important developments related to CFS. Most important has been the knowledge gained from research, some funded by NIH and CDC, including prevalence surveys as well as a number of other surveys by CDC. Conferences on CFS in 1989 (San Francisco), 1990, 1992, 1994, and 1996 helped summarize research advances and disseminate information to researchers and practitioners. But there remained a great deal of uncertainty about CFS among clinicians, including academic clinicians specializing in infectious disease. In 1995, CDC published The Facts About Chronic Fatigue Syndrome, an excellent summary for clinicians. Also in 1995 an excellent paper by Sekuda and Gantz on management strategies for chronic fatigue was published. The publication in 1997 by the American Journal of Medicine of the proceedings of the 1996 research conference was another step forward. This week's meeting is further evidence of progress.
If there has been so much progress in the past ten years why is it time to change the name of CFS?
First and foremost, most physicians have no respect for the name and it sends the wrong message.
Second, the approach to CFS is now dominated by the biopsychosocial approach that gives excessive emphasis to the social, behavioral, and emotional factors in the presentation and perpetuation of symptoms. The "bio" seems to be missing. While I believe in the psychosocial determinants of health paradigm, this approach to CFS has gone too far.
The problem is evidence in the proposed ICD-9 codes for CFS, and the 1996 report of the Joint Working Group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners on Chronic Fatigue Syndrome in the United Kingdom. The Royal Colleges convened a working group after a request from the UK's Chief Medical Officer. The group recommended that the term encephalomyelitis be dropped in the UK and that it be replaced by CFS.
In its editorial comment on the report of the working group, Lancet noted, "Psychiatry has won the day for now. A decade hence, when an organic cause for at least some cases of CFS have emerged, it would be tempting to ask the committee to reconvene. We believe that the report was haphazardly set up, biased, and inconclusive, and is of little help to patients or their physicians.
Dr. Stephen Straus of the NIH had a very different view and one that I strongly disagree with. He wrote in the British Medical Journal: "The report constitutes, arguably, the finest contemporary position statement in the field, and physicians and patients are well advised to read it, but it is sure to engender disagreement on both sides of the Atlantic." Indeed, it has engendered disagreement.
Third, the current approaches to CFS, except in a few hands, do not take sufficient cognizance of the research on brain positron emission tomography, cognitive function, possible biomarkers, electron microscopy, the evidence from past outbreaks, or a number of the studies presented here.
Finally, the overlap of symptoms with Gulf War Syndrome, fibromyalgia, and multiple chemical sensitivities merit a thorough re-examination and the development of a comprehensive strategic plan for research. We owe it to the thousands of individuals who suffer from these chronic debilitating diseases to place these issues squarely on the national research agenda.
As a first step, I hope the Association will debate the name issues actively on Monday, reach a conclusion, and strongly advocate a change before the Department of Healh and Human Services Chronic Fatigue Syndrome Coordinating Committee on Tuesday.
Let me close with [a story told by Lyndon Baines Johnson about Winston Churchill, concluding] "so little done, so much to do."
Dr. Philip Lee
Assistant Secretary of Health, US DHHS 1993-1997
Institute for Health Policy Studies
1388 Sutter Street, 11th Floor
San Francisco, CA 94109
MPWC'S WOULD LIKE TO CONGRATULATE DR. LEE FOR RECEIVING THIS AWARD AND THANK HIM FOR HIS DEDICATION AND COURAGE.