ú Subject: CFS-NEWS #5 Summaries of Albany conference HHHHHH HHHHHH HHHHHH H H HHHHHH H H HHHHHH H H H HH H H H H H H HHHHH HHHHHH HHHHH H H H HHHH H H H HHHHHH H H H H HHH H H H H H HHHHHH H HHHHHH H HH HHHHHH HHHHH HHHHHH Chronic Fatigue Syndrome Electronic Newsletter --------------------------------------------------------------------- No. 5 October 7, 1992 Washington DC --------------------------------------------------------------------- CONTENTS >>>1. Summaries of Albany conference >>>2. Publications update Several dozen papers were presented at the international CFS clinical and research conferences held in Albany, New York USA this past weekend. The summaries shown below are based on comments from just a few of the researchers who participated in the conference and whom the editor was able to interview. These descriptions express the individual opinions of those who were interviewed. Future editions of CFS-NEWS will include perspectives from other participants and will feature in greater detail several of the topics presented at the conference. Several leading participants commented at the conference that despite current progress in CFS research, it should be understood that the search for solutions to the problem will need to continue for several more years at least. -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>1. Summaries of Albany conference DR. NANCY KLIMAS discussed the highlights of the conference as follows. Dr. Klimas is an associate professor at the Univ. of Miami Medical School, director of the AIDS clinical research unit at the Miami VA Medical Center, and she co-chaired several of the Albany conference sessions. --- Two presentations [Gunn et al.; Heneine et al.] both came to conclusions opposite from other recent work by Martin and by DeFreitas regarding identifying a retroviral origin for CFS. These contradictory conclusions are alarming since all of the research groups in question are well published. It would be unfair to consider the case closed on DeFreitas' research since the coded samples for her work have not yet been completed. [Editor's note: Dr. DeFreitas' work has been delayed by her move from the Wistar Institute in Philadelphia to the Univ. of Miami Medical School.] -- Two separate studies arrived at similar conclusions with respect to the search for physical markers for CFS. Dr. Ismael Mena, using SPECT scans, presented a study showing poor blood flow in CFS patients in the hypothalamic and limbic areas of the brain, and in the frontal lobes, when compared separately to patients who were healthy and also to patients who had depression but did not have CFS. Dr. Curt Sandman, using a completely different approach, described his EEG-like mapping of brain blood flows which discovered problems in the same brain areas as did Dr. Mena's study. Although Dr. Sandman's work included this issue, his study primarily focused on identifying which aspects of memory, attention and learning problems are unique to CFS patients. -- Two separate studies came to similar conclusions regarding identifying a genetic marker for CFS, although further studies will be required for confirmation. Dr. Cheryl Carlucci found a genetic predisposition to sleep disorders associated with HLA type DQWL in CFS patients. A separate study by Patarca, Klimas, et al. found tight correlations among the levels of certain soluble immune mediators in addition to an indicator of the activation marker HLA-DR; these correlations were not found among controls. --- Suhadolnik's [et al.] well done study on the 2-5A antiviral pathway shows that this is another potential surrogate marker for CFS. -- Important progress was seen in using a uniform definition of CFS in the various epidemiological studies that were reported. This accords with a directive issued by an NIH workshop on CFS held last year. -- There was an important discussion at the conference about the need to develop a separate definition of CFS with a view to measuring functional disability, to be used by the U.S. Social Security Administration and others. It is important to distinguish CFS definitions needed to guide current research from definitions needed to make determinations about disability. --- A report indicated that natural killer cell formation is the most consistent functional defect for CFS [Barker et al.]. This is important because up until now there has been no sense of there being any marker that predicts the severity of the disease. If this comes to be accepted by the research community, it will be an important diagnostic tool. --- Abnormalities in red blood cell shape during exercise by CFS patients were observed [Simpson and Murdoch]. --- The study by Patarca, Klimas, et al. indicates that peripheral blood (i.e., blood found in arms, legs, areas away from the head and torso) does not show the same immunologic dysfunction as does blood from other areas; therefore body tissue other than peripheral blood should be the focus of the search for a physical cause for CFS. Dr. Klimas was asked about Dr. Jay Goldstein's presentation of his limbic hypothesis. This was also presented earlier this year, she mentioned. Goldstein explained how the limbic system comprises the interaction of cytokines, neurotransmitters and the endocrine system, and that a disturbance to this system may explain much about CFS. Klimas commented that this was a well developed theoretical model which should guide some future research. Dr. Klimas noted that not all relevant studies currently available could be presented at the conference due to time limitations. DR. ANTHONY KOMAROFF gave a brief summary of the conference as follows. Dr. Komaroff is an associate professor of medicine at Harvard Medical School, president of the USA National CFS Advisory Council, and is a leading figure in CFS research. -- Increasing evidence was presented [in a paper by Gow, Behan and Behan] that enteroviruses are found in tissues of CFS patients much more often than in those of healthy people. -- A natural enzyme system [2-5A Synthetase] apparently is turned on to a very great degree in persons with CFS compared to healthy controls, so the body is reacting as if infected by a virus. [Paper by Suhadolnik, et al.] -- Reports were presented suggesting that a certain genetic marker appears in CFS patients much more often than in healthy people. If borne out by further research, this would indicate that there is a genetic predisposition which affects the immune system dysfunction which underlies this illness. -- Two reports cast doubt on the theory that retroviruses play a role in this illness, but these reports do not completely rule out the possibility that retroviruses may play a role in the illness of some patients. [Papers by Gunn et al., Heneine et al.] DR. MICHAEL GOLDBERG is a Fellow of the American Academy of Pediatrics and serves on various committees of the Tarzana Medical Center (California). His summary is as follows. -- This conference conveyed the sense that the basic question is no longer 'Does CFS exist?' but rather 'How can we treat CFS?'. CFS is now a legitimate disease. -- Several papers reported positive results regarding the use of kutapressin as a treatment; this will be of interest to clinicians treating CFS patients. -- Epidemiology is one the more controversial areas of discussion. There is a danger from the viewpoint of public perception that current research, admittedly based on a very limited definition of CFS, is seriously undercounting the disease. Based on his professional experience and on discussions with other clinicians, Dr. Golberg says that there is a gross understatement of the problem. He mentions that he is involved with others in an effort to develop a research database for immune dysfunction studies which will hopefully help to generate more accurate statistics for the prevalence of CFS. Acknowledgements At the close of the research conference, the attendees gave a warm round of applause for Leslie Boyer and the other volunteers from the Capital District CFIDS Support Group who did such an excellent job of putting the conference together. Ms. Boyer noted that Certified Travel Associates had donated their staff's time to assist in organizing the event. Individual volunteers from Albany who deserved a large measure of thanks for their efforts included Jeane Keefe, the seemingly indefatigable Dave Johnson, Christopher Lohr, Sandy Rhodes, Kathy Caponera, Janice Morano, Betty Suntheimer and Cheryl Spaulding. In addition, important contributions were provided by others outside of Albany, specifically Nancy Smith, John Kaufman and Kendra Dayger; and also the support group leaders from throughout North America who quickly got the word out about the conference. The editor is grateful to Drs. Klimas, Komaroff, and Goldberg for the time they gave for their interviews for this edition of CFS-NEWS. -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>2. Publications update A. A new edition of the CFIDS Chronicle is being mailed out now. It is a Physician's Forum focusing on diagnostic issues. B. Newsweek magazine reported on ICL, the newly discovered immune dysfunction disease, in its Sept. 7 issue. Also, general updates about CFS research appeared in Newsweek's Sept. 30 issue. ===================================================================== CFS-NEWS is an independent newsletter edited by Roger Burns in Wash- ington D.C. and is distributed on Internet and Fidonet. Back issues are on file on the CFIDS/CFS BBS in Maine USA at tel. 1-207-623-8486, available from 12:00 mid-day to 12:00 midnight Eastern Time. Sugges- tions and contributions of news may be sent via Internet to CFS-NEWS @LIST.NIH.GOV, or via Fido NetMail to CFS-NEWS at 1:109/432, or post a message to the CFS echo. Copyright (c) 1992 by Roger Burns. Permission is granted to excerpt this document if the source (CFS-NEWS) is cited. Permission is also granted to reproduce the entirety of this document unaltered. Note that Fido and Fidonet are registered marks of Tom Jennings and Fido Software. ===================================================================== INTERNET users are encouraged to obtain the RESOURCE file and other CFS files at the NIH file server. To obtain the resource file send Internet e-mail to the address SERVER@CU.NIH.GOV with the subject line GET FTP CFS.RESOURCE (the message text is ignored). Or log in via anonymous ftp to cu.nih.gov or 128.134.64.7 with password=guest, directory=CFS, filename=RESOURCE. Distribution of CFS-NEWS on the Internet is sponsored by the NIH Computing Utility; however, this independent newsletter does not represent the views of the National Institutes of Health. To subscribe, send the command SUB CFS-NEWS to the address LISTSERV@NIHLIST.BITNET or @LIST.NIH.GOV CFS-NEWS is also posted to the CFS echo on Fidonet. =====================================================================