The following report on the March 1, 1994 meeting of the U.S. Interagency Coordinating Committee for CFS was published in CFS-NEWS no. 32. ---------------------------------------------------------------------- U.S. ICC meeting summary [The following is a report by the editor of CFS-NEWS who attended the March 1 meeting.] The following is a summary of the March 1, 1994 quarterly meeting of the U.S. Interagency Coordinating Committee for CFS. The meeting was chaired by U.S. Assistant Secretary for Health Dr. Philip Lee. Although the meeting was advertised as accepting no public testimony, Dr. Lee accepted comments from those who did attend. Research case definition article: No draft was available at the meeting or for public distribution, however one soon would be circulated for comment to ICC governmental members and the committee's four newly appointed consultants (Judy Basso of the Minnesota CFS Assoc., Marya Grambs of the CFIDS Foundation, Kim Kenney of the CFIDS Assoc. of America and Orvaline Prewitt of the National CFS and Fibromyalgia Assoc.). The CDC's Dr. Mahy said that the current draft contained explicit clinical guidelines and recommended lab tests. The current plan is to finalize a draft by April for submission to a widely read peer-reviewed journal for possible publication in the summer. The name of the illness: Several attendees, notably Tom Hennessy (President of RESCIND) and Giovanna Del Deo (of RESCIND and the Massachusetts CFIDS Assoc.) urged that a change of name be included in the research case definition article, and they underscored that the current name is pejorative. Dr. Lee reiterated from the previous meeting (Nov. 17) that a change of name will expectedly happen when sufficient evidence reveals the cause of the disease, and furthermore the government does not have the responsibility for naming illnesses. Kim Kenney stated that it would be useful to have a concurrent eponym designated for the name, and she referred to at least one other government official who seemed to agree with that approach. Dr. John Renner (medical adviser to the National CFS and Fibromyalgia Assoc.) stated that this was a political issue and that very valuable time was being wasted by dwelling on it. Dr. Reeves of the CDC noted that the current draft of the research case definition article downplayed any endorsement of the current name, even though it did not recommend a specific name change just yet. In short, the various participants largely retained their previous positions on this issue. Grant proposals: Dr. Lee commented on the high quality of the research grants that had been approved, and recommended that NIH look into the work of the Human Genome Project with respect to CFS. He also noted that many studies had been approved through the National Institute for Allergies and Infectious Disease whereas only one study had been approved through the National Institute for Mental Health. Dr. Lee said that this fact underscored the idea that CFS does not appear to be a behavioral illness. CDC surveillance study: Work is nearly complete, reported Dr. Reeves, and the figures still appear in the range of 4 to 7 per hundred thousand. However, he reiterated the potential fault that a passive surveillance study such as this that relies on sentinel physicians might undercount the illness. Future studies will employ active surveillance. NIH research: Dr. Schluederberg of NIH reported that there will be a follow up trial with respect to previously published work by Demitrack et al. which had found a novel hormonal imbalance among CFS patients. The CDC informational brochure: Dr. Reeves reported that a 2nd draft had been given limited circulation for comment and that a 3rd draft is available for full public distribution and comment. (The comment period closed on March 25.) Dr. Reeves hoped to finalize the text by April 1. Orvaline Prewitt commented that the current draft was good, and Dr. Renner said that there was a tremendous need for this document to be completed and distributed to physicians and patients. Kim Kenney said that the current draft was "much, much better" and complimented the CDC for involving so many people in the comment process. Communications technology: Tom Hennessy proposed that there be a PC-based system to collect data and assist clinicians in diagnosing immunological diseases, which the government should promote. Dr. Lee directed Mr. Hennessy to follow up on this proposal with the Public Health Service's chief of data processing. There was not enough time to complete the meeting's agenda. Regarding future quarterly meetings, Dr. Lee said that the committee and its consultants would conference by telephone in the summer and winter, and that there would be in-person meetings in the spring and fall. The next in-person meeting might occur in the fall in Atlanta to coincide with a conference that might be held then. Otherwise it would take place again in Washington. Furthermore, Dr. Lee welcomed written comments from the public regarding additional consultants to be added to the committee, both with respect to private medical researchers and possibly additional patient advocates. Write to: Dr. Philip Lee U.S. Assistant Secretary for Health 200 Independence Avenue S.W. Washington, DC 20201