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Meetings and Workshops: October 13, 1999

On October 13, 1999, non-Federal representatives of the Chronic Fatigue Syndrome (CFS) Coordinating Committee and several advocacy organizations for patients with CFS met with senior CDC staff in Atlanta. The purpose of the meeting was to review recent developments related to CDC's CFS research program, particularly the agency's response to the recent Inspector General's (IG) report, and to provide CFS patient advocacy group representatives the opportunity to comment on various aspects of the CFS program. Several consistent themes emerged from discussions at the meeting, including recommendations regarding CFS program management issues, health information and education, the CFS case definition, the possibility of changing the name "chronic fatigue syndrome," and CFS research activities. This report summarizes the major points of the meeting.


CFS Program Management Issues

CDC Response to IG Report

CDC Director Dr. Jeffrey Koplan opened the meeting by acknowledging that the agency had made serious mistakes in the management of the CFS program, as described in the IG report. CDC did not spend CFS funds as they were intended to be spent, and the agency is taking several actions to rectify those mistakes and ensure that they do not recur. Dr. Koplan offered a personal apology to each of the participants. Personal apologies were also expressed by Dr. James Hughes, Director of the National Center for Infectious Diseases (NCID), and Dr. Brian Mahy, Director of the Division of Viral and Rickettsial Diseases (DVRD).

CDC's response consists of corrective measures that will be carried out in two tracks. In the first track, which addresses the management of funds and program administration, CDC will do the following:

The second track involves reinvigorating CDC's efforts to understand CFS and to prevent it. This reinvigoration includes development of a long-term research program that will be prepared with input from external peer-review scientists and CFS patient advocacy groups. Dr. Koplan said that this meeting is a first step in pulling together ideas from different sources for reinvigorating the CFS program. Dr. Koplan also said that he and other CDC staff wanted to hear comments from participants regarding the best approaches for reinvigorating the CFS program.

CFS Program Placement and Staffing

Patient advocates expressed concern about the continued presence of CDC staff persons involved in the mismanagement of funds. They also noted their concerns about the possibility of a negative working environment for CFS researchers and the difficulty such an environment might pose for reinvigorating the CFS program. It was suggested that either the location of the CFS program (now based in DVRD) be changed or the current leadership be replaced and that an agency CFS program coordinator be appointed. In response, Dr. Koplan said he would not discuss CDC personnel matters at the meeting. He stated that it is his responsibility to foster an environment at CDC in which all personnel can work cooperatively and productively, and numerous efforts are under way to accomplish this objective (for example, by improving CDC's work space and physical facilities). With regard to the CFS program, Dr. Koplan said the most important action that can be taken for ensuring a positive working environment is for CDC senior management to pay closer attention to the program. This managerial oversight will occur as part of the CFS reinvigoration effort, he said.

Need for Additional Resources

Representatives at the meeting stated that CFS funds have previously been used to support other CDC program activities, but monies have not been channeled from other programs into CFS activities. Other CDC programs may be able to make important scientific contributions to CFS research, and more should be done to look at how various resources can be coordinated. One representative said resource support for the CFS program should be considered a "two-way street" and recommended that CDC staff explore ways to obtain funding and support from other programs (e.g., chronic disease research funds).

Representation at Other CFS Meetings

Several CFS patient advocates stated that they were pleased to participate at today's meeting; however, it was also noted broader representation is needed at other CFS meetings, particularly at those of the CFS Coordinating Committee. One participant recommended that at least one CFS patient advocate representative be included on the group that will consult with CDC officials about the CFS research agenda in the coming weeks. Another participant requested that Drs. Satcher and Lee be invited to attend future meetings related to CFS.


Communication and Education

The reinvigoration of CDC's efforts in CFS research offers an excellent opportunity to help legitimize CFS by promoting a better understanding of the disease among physicians and the public, according to several participants. There is concern that most physicians, other health care professionals, and the public do not recognize CFS as a disease or as a public health problem, despite new information that has become available in the past 10 years. CDC should actively work to change this perception and take a leadership role in educating physicians and the public about CFS. Specific recommendations about the need for improved CFS education include the following:


CFS Case Definition

There was broad support among participants for reconsideration of the current CFS case definition. Several participants stated that the revised CFS case definition in 1994 had overly expanded the scope of the definition, and others expressed concern that the current definition fails to include some persons with CFS-like illnesses. Individual recommendations for revising the current CFS case definition included the following:

Dr. William Reeves, Chief of the Viral Exanthems and Herpesvirus Branch, stated that one of the proposed activities in the program's tentative work plan (see below) is to begin the process of reexamining the CFS case definition. CDC staff stated that changes in the case definition must be considered carefully because they can have important consequences for the specificity and sensitivity of various studies.


Name Change

It was strongly recommended that the name "chronic fatigue syndrome" be changed. According to several participants, the name "CFS" is vague, inaccurate, and contributes to maintaining common misperceptions about this disease. Dr. Koplan said that he is willing to support consideration of a name change, but he emphasized that there must be a scientific basis for such a change and the name itself must be scientifically descriptive and valid.


CFS Program Activities

Drs. Hughes and Mahy reviewed the approach used at CDC for the study of infectious diseases. Dr. Reeves introduced key scientific staff, outlined the CFS program objectives, and reviewed the prevalence findings from the Wichita CFS study. A detailed research plan will be presented to the program-review group in the coming weeks; program plans will also be presented at the upcoming meeting of the CFS Coordinating Committee. Future activities of the CFS program tentatively include the following: continue the Wichita study; maintain an active clinic at the study site; determine if the Wichita data can be extrapolated to the general population; continue to assess risk factors for CFS; determine if there are differences in the occurrence of CFS by region; initiate studies using molecular fingerprinting techniques to identify patterns of genetic expression; begin a national registry of CFS patients; provide current and appropriate health information to a variety of constituent audiences; pursue hiring or contracting with a neuroendocrinologist; and begin work on review of the current CFS case definition. The program is also interested in conducting cluster investigations and in developing more-focused health education activities and products. Participants addressed several aspects of the CFS research program (below).

Study of CFS in Children

Several representatives strongly recommended that a prevalence study of CFS among U.S. adolescents be made a high priority of the research program. According to one participant, many physicians believe that CFS does not occur in children, and that children with CFS symptoms are simply mimicking the behavior of their mothers who have CFS. The following points were raised about the need for a high-priority study of CFS in children:

It was also pointed out that studies of children require approval from the CDC Institutional Review Board and from OMB; these approvals are sometimes difficult to obtain and can delay the study. Moreover, such a CFS prevalence study would be costly (>$4 million).

Molecular Epidemiology

Dr. Reeves and other CDC staff explained that one approach being used for CFS studies is to determine the molecular "fingerprint" of genes expressed in CFS patients and compare these results with those for non-fatigued controls. The technology has been used successfully in human papillomavirus studies and is now being applied in CFS research. The tentative research plan includes this study, beginning with analysis of clinical specimens collected from the Wichita study site.

CFS Cluster Investigations

CDC is able to investigate only a small proportion of all U.S. outbreaks for which states request assistance. Some clusters of CFS cases have not been investigated; others have been investigated by CDC, but have not been reported. Additionally, CDC cannot unilaterally decide to investigate illness clusters, as they must be invited to do so. One participant recommended that CDC write up the reports on these investigated clusters and publish them. Another participant requested that CDC develop reporting guidelines to assist hospitals and other institutions in recognizing clusters of CFS cases and in requesting CDC investigations of such clusters.

Other CFS Research Recommendations

Several comments were made about the need to obtain additional review of the CFS research agenda; for example, should the scientific spotlight be broadened to include additional activities, or should it be more focused? No consensus was reached about CFS research priorities, but there will be additional opportunities for input. Additional comments regarding CFS research activities included:


Closing Remarks

Dr. Koplan reiterated his support for reinvigorating CDC's efforts in CFS and for consulting with CFS advocacy groups and other interested parties as part of this process. He said that CFS activities must be carried out in the context of CDC's mission, which is to promote health and quality of life by preventing and controlling disease, injury, and disability. Dr. Koplan noted that CDC's intent is to move forward expeditiously with an approach that will enable the CFS program to achieve optimal results; however, CDC may not be able to address all aspects of this disease, and the potential roles of other government agencies and nongovernment organizations should be considered.

Appendix 1

NAMES OF CDC CONTACTS
CHRONIC FATIGUE SYNDROME MEETING
OCTOBER 13, 1999

Appendix 2

NAMES OF PERSONS ATTENDING
CHRONIC FATIGUE SYNDROME MEETING
OCTOBER 13, 1999

NAME AFFILIATION
Patricia S. Blankenship National CFIDS Foundation
Roger Burns CFS Newsletter
Pat Fero Wisconsin CFS Association, Inc.
Aba Heiman Chronic Fatigue Syndrome Coordinating Committee
K. Kimberly Kenney The Chronic Fatigue and Immune Dysfunction Syndrome Association of America
Chronic Fatigue Syndrome Coordinating Committee
Nancy G. Klimas Chronic Fatigue Syndrome Coordinating Committee
Jill McLaughlin National CFIDS Foundation, Inc./ME
Rebecca Moore CFIDS Association of America, Youth Program
Robert J. Mulligan Georgia CFS Association
Orvalene Prewitt National Chronic Fatigue Syndrome & Fibromyalgia Association
Meghan-Morgan Shannon Medical Professionals with CFS/ME
Jonathan B. Sterling New Jersey CFS Association
Vicki C. Walker The Chronic Fatigue and Immune Dysfunction Syndrome Association of America
Mary Beth Buchholz The Sheridan Group
Paula M. Carnes Unify Coalition and CSSA

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