ú Subject: CFS-NEWS Issue #7 -- New book reviews USA research HHHHHH HHHHHH HHHHHH H H HHHHHH H H HHHHHH H H H HH H H H H H H HHHHH HHHHHH HHHH 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. 7 October 20, 1992 Washington DC -------------------------------------------------------------------- CONTENTS >>>1. Book: "Review of Mainstream CFIDS Research in the USA 1990 through June 1992" >>>2. New publication by and for patients >>>3. CFS-NEWS seeking link to USENET -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>1. Book: "Review of Mainstream CFIDS Research in the USA 1990 through June 1992" Author: Kendra Dayger, BS, MS [The following was taken from the publisher's advertisement:] A review (over 200 pages) of major mainstream CFIDS research as demonstrated at national CFIDS medical conferences from 1990 through June 1992. Written to be clear, concise, and useable. Sections on Diagosis, Virology, Immunology, Brain, Ampligen, and Public Health. One source -- bound, indexed, referenced, readable. Also includes government testimony on Social Security Disability and federal research, and a report on the Centers for Disease Control Surveillance Study. A must for anyone seeing patients or documenting disability. [From the Foreword:] "[This book] ...surveys the major areas of mainstream thought, as demonstrated at CFIDS conferences, by the researchers who have been working together and following this disease for several years now. The studies are peer reviewed in the best sense, in that these researchers from all over the country have talked to each other, and shared their work, and work to test each other's hypotheses.... It is the thesis of this review that what is missing is a *framework* for seeing the pattern as a whole, a syndrome, rather than as miscellaneous symptoms which vary from visit to visit. Although the government will be the last, by design, to make it official, CFIDS is clearly no longer a diagnosis of exclusion. This review seeks to show practicing physicians why." [Summary of reviews presented in the book:] DIAGNOSIS Footprints in the Sand -- quotes from speech by Marc M. Iverson, Nov. 17, 1990 U.S. Government Definition: The Centers for Disease Control Diagnostic Criteria. Cheney, Paul R: CFIDS Diagnosis for the Practicing Physician Bell, David S: CFIDS in Children. Jessop, Carol: A Study of 1,324 People with CFIDS Moldofsky, Harvey; Yunus, MB: Fibromyalgia Syndrome and CFIDS VIROLOGY DeFreitas, Elaine: Possible CFIDS-Associated Retrovirus Koprowski, Hilary: Why Are Retroviruses So Hard to Find? Martin, W. John: Spumavirus In CFIDS and Other Neurological Disorders Suhadolnik, Robert J: Effect of Ampligen on the 2-5A Synthetase/RNase L Antiviral Pathway Komaroff, Anthony L: The Possible Role of HHV-6 in CFIDS IMMUNOLOGY Klimas, Nancy: Immunological Indicators in CFIDS Levy, Jay; Landay, Alan: CIAS (Chronic Immune Activation Syndrome) A Better Name for CFIDS? Lloyd, Andrew R: First Published Epidemiological Study on CFIDS Wakefield, Denis: Immunological Markers and the Use of IV Immuno- globulin G Lieberman, Jack: Serum ACE (Angiotensin-Converting Enzyme) An Indicator for CFIDS? Steinbach, Thomas L; Hermann, William J, Jr: Kutapressin Drug Treatment for CFIDS BRAIN Goldstein, Jay A: BEAM, SPECT, and PET Functional Brain Imaging in CFIDS Bastien, Sheila: Neuropsychological Deficits and the WAIS-R Iger, Linda Miller: Neuropsychological Deficits and the MMPI Hickie, Ian: The Psychiatric Assessment of Depression in Patients with CFIDS Sandman, Curt: Memory Deficits in CFIDS AMPLIGEN HEM Pharmaceuticals: Ampligen Peterson, Danial L: Ampligen as a Treatment for CFIDS Kaiser, Nancy: CFIDS Ampligen Patient #00 PUBLIC HEALTH Montgomery, Jan: CFIDS and the Public Health Department Federal Government -- CDC: Federal Government Action -- The Centers for Disease Control Actively Involved Federal Government -- Congressional Hearings: Testimony at Congressional Hearings to the Committee on Appropriations of the House of Representatives, Spring 1991 for Fiscal year 1992 Federal Government -- NIH: National Institutes of Health Conference on CFIDS, March 1991; a review by Susan Levine MD Advocacy -- A Question: How did you hear about CFIDS? Hyde, Byron: Historical perspective and World View on CFIDS/ME Last But Not Least: A Few Words from the Patients ----------------------------------- Price: $18.50 Shipping and handling: $3.50 for USA $5.50 for Canada $8.50 elsewhere Pay using US funds or credit card. Contributions to support this non-profit project are gratefully accepted. If paying by credit card, include credit card #, expiration date, and indicate whether MasterCard, Visa or American Express. Please make checks payable to CFIDS-JCC. Mail to: CFIDS Rochester Research Project 1200 Edgewood Avenue -- RL Rochester, NY 14618 USA (Please allow 4 weeks for delivery.) -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>2. New publication by and for patients [The following announcement has been received by CFS-NEWS.] The National Link is a newly formed non-profit organization. It will publish _THE LINK_, a quarterly by and for CFS patients, their friends, and their family members. The goal of _THE LINK_ is to facilitate communication among its readers by sharing their tips on coping, personal stories, creative expression, and humor. [The editor of THE LINK adds that inquirers will receive the first issue free. Regular subscription per year is $15.00 for USA addresses, $18.00 elsewhere. Mailings outside of USA & Canada will be by 3rd class mail only.] Please send name and address to: The National Link, Inc. P.O. Box 51952 Durham, NC 27717-1952 USA or contact Sheila at 1-919-493-6034. -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>3. CFS-NEWS seeking link to USENET The Editor is seeking permission to set up a USENET newsgroup to distribute CFS-NEWS. This would greatly increase the number of readers who may have access to CFS-NEWS. USENET newsgroups are distributed on the UUCP network and are available on many BBSs. Initially, a newsgroup named bit.listserv.cfs.newsletter may be set up; this will have limited distribution, but may be set up as soon as November. Later, a newsgroup named sci.med.cfs.newsletter may be set up; this will have wide distribution, and might be ready by the begining of 1993. A similar two-step process is being pursued to link the Internet CFS-L discussion group to USENET. News about progress on these links will be reported in later issues of CFS-NEWS. =================================================================== 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. Perm ission 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. =====================================================================