ÿ@SUBJECT:CFS-NEWS #20 CFS underdiagnosed Message-ID: <9306031130.AA01569@uu.psi.com> From CFS-NEWS@LIST.NIH.GOV Thu Jun 3 07:30:29 1993 Received: from list.nih.gov by uu.psi.com (5.65b/4.1.031792-PSI/PSINet) via SMTP; Received: from LIST.NIH.GOV by LIST.NIH.GOV (Mailer R2.10 ptf000) with BSMTP id 9601; Thu, 03 Jun 93 07:27:28 EDT Date: Thu, 3 Jun 1993 07:21:58 EDT Reply-To: Chronic Fatigue Syndrome Newsletter CFIDS/ME Sender: Chronic Fatigue Syndrome Newsletter CFIDS/ME From: Roger Burns <73260.1014@CompuServe.COM> Subject: CFS-NEWS #20 CFS underdiagnosed X-To: CFS-NEWS@LIST.NIH.GOV To: Multiple recipients of list CFS-NEWS 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. 20 June 3, 1993 Washington DC -------------------------------------------------------------------- CFS UNDERDIAGNOSED ACCORDING TO LYME STUDY CONTENTS >>>1. CFS underdiagnosed according to Lyme study >>>2. Lyme research conference >>>3. Official W.H.O. classification for CFS >>>4. Compuserve conference on CFS >>>5. EI/MCS discussion created on Fidonet >>>6. Haworth publications update The next edition of CFS-NEWS will contain a description of the Los Angeles conference of early May. We are told that the next CFIDS Chronicle, due out soon, will report on many of the details of this conference. ---------------------------------------------------------------- >>>1. CFS underdiagnosed according to Lyme study A study published in the Journal of the American Medical Association (JAMA) finds that most patients diagnosed as having Lyme disease are misdiagnosed and usually have a different illness, the other illness most often being chronic fatigue syndrome or fibromyalgia. Shortly after this study was published, the editors of the LymeNet electronic newsletter issued a lengthy response giving a detailed criticism of the study. And in a separate report, a spokesman for the U.S. Centers for Disease Control and Prevention (CDC) stated that Lyme disease is under-counted in the USA. The JAMA study, appearing in the April 14 issue, was authored by Allen Steere, MD, et al. and is titled "Overdiagnosis of Lyme Disease" (JAMA 1993; 269:1812-1816). The study reviewed 788 cases of patients who were previously thought by the referring physician or the patient to have Lyme disease. [Lyme disease is a tick-borne spirochetal infection which prompts a variety of symptoms similar to CFS.] The study found that 180 of these patients (23%) had active Lyme disease; 156 patients (20%) previously had Lyme disease but now have a different illness (most often CFS or fibromyalgia); and 452 patients (57%) had no Lyme disease. Of this latter category, most were found to currently have CFS or fibromyalgia. The editors of the LymeNet-L electronic newsletter criticized Dr. Steere's study with regard to its methods, it assumptions and its conclusions, and they expressed concern that the publication of the study "will instill a false sense of security about Lyme disease" and that it will have detrimental effects on medical and lay perceptions, and on research funding for Lyme disease. In a separate report, Dr. David Dennis of the CDC stated that there probably is considerable under-reporting of Lyme disease. Dr. Dennis commented on a just-published CDC report showing a 19-fold increase in the number of Lyme cases since 1982, prompting the agency to deem Lyme disease "an emerging infectious illness" in the USA (as reported in the CDC's Morbidity and Mortality Weekly Report of May 14, 1993, MMWR 42(18)). The editor of CFS-NEWS would like to note that, aside from cases where diagnoses are questionable between the two illnesses, it appears from the reports described here and from others that both CFS *and* Lyme disease are substantially undercounted. We should all hope that the medical community and governmental authorities will give serious and appropriate attention to both of these illnesses. Readers may be interested to know that the Connecticut CFIDS Assoc. has published, in its most recent "Network" magazine, an article which discusses and compares CFS and Lyme disease. It is titled "Two Similar Diseases: CFIDS and Lyme Disease". A print copy of the full newsletter containing this article (be sure to request "the Spring '93 edition") is available for $3 from the Connecticut CFIDS Assoc., Inc., 171 Naubuc Avenue, East Hartford, CT 06119, USA. (Regular subscriptions of this quarterly magazine are $20/yr.) This particular article will be available as an electronic file sometime after June 12. On the Internet send the command GET CFS AND-LYME to the address listserv%albnydh2.bitnet@albany.edu . Or download from the Project ENABLE BBS, tel. 1-304-766-7842, file area 22, filename LYME-AND.CFS (Again, after June 12.) Thanks to Matt Straznitskas, Cheryl O'Donnell and the other hard-working folks at the Connecticut CFIDS Network for making this article available. [Sources for this article were: the JAMA study as cited; the special edition of the LymeNet-L newsletter; the CDC's MMWR report as published in the HICN Medical Newsletter (#613, May 15); comments from Dr. Dennis appeared in a UPI news story reprinted in LymeNet-L #11. To get the special edition of the LymeNet-L newsletter on Internet, send the command "get LymeNet-L/Newsletters 1-10" (without quotes) to listserv@lehigh.edu .] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>2. Lyme research conference [Reprinted from the LymeNet-L electronic newsletter #11.] FROM: Yale University School of Medicine SUBJECT: The Sixth Annual Rheumatology Symposium on Lyme Disease The sixth annual Lyme disease symposium sponsored by the Section of Rheumatology at Yale School of Medicine will provide a focused update on all aspects of Lyme disease. Both clinical topics and scientific advances will be reviewed. Specific attention will be directed to vector ecology, epidemiology (both national and regional), clinical spectrum, laboratory diagnosis, issues in treatment, vaccine development, and progress towards better diagnostics. Speakers will emphasize the current state of knowledge and areas of active research. Practical advice will be given about how to approach commonly encountered questions in clinical practice. The symposium is directed toward primary care physicians, internists, pediatricians, rheumatologists, and other health care professionals interested in Lyme disease. For more information: 1-203-785-4578 VOICE 1-203-785-3083 FAX [To subscribe to the Internet LymeNet-L newsletter, send the command sub LymeNet-L to the address listserv@lehigh.edu .] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>3. Official W.H.O. classification for CFS The World Health Organization's International Classification of Diseases, volume 10, now includes a classification for CFS as an organic disorder of the brain. The illness's designation is "G93.3" and the name is listed as "Postviral fatigue syndrome -- benign myalgic encephalomyelitis". [This was reported in 'InterAction': the Journal of M.E. Action (Britain), numbers 11 and 12.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>4. Compuserve conference on CFS The management of Compuserve's Health & Fitness Forum (GO GOODHEALTH) is considering establishing a CFS discussion section. In the meantime, the May 12 live conference on CFS was deemed a success despite technical difficulties, and another live conference on the topic of CFS is being scheduled for Sunday, June 20 9:30 pm Eastern / 6:30 pm Pacific GOODHEALTH Forum Whether a formal CFS messaging & files area may be established will depend on the level of participation by CFS-oriented users in the Forum during the next few months. For now, messaging and file exchanges are being encouraged in the Self-help/Support section of the GOODHEALTH forum. Discussion of CFS topics in the GOODHEALTH forum will be facilitated during this trial period by Roger Burns, who is the publisher/editor of CFS-NEWS. Mr. Burns will be encouraging and participating in message discussions following his return from visiting the Cheney Clinic (approximately June 10). He will also be the featured "guest speaker" at the June 20 live conference on CFS issues. Compuserve is considered by some to be an expensive service, but many have found effective ways to cut costs. Compuserve's "alternate" pricing plan is $2.50 per month. An hourly charge of $6.30 is assigned to those who log in at 300 baud, a sufficient speed, some say, for messaging although too slow for file exchanges for many. And some use various "quick reader" utilities that are available in order to minimize their time on-line. [For information about Compuserve subscriptions, tel. 1-800-848-8199 in USA/Canada; elsewhere tel. 1-614-457-0802 (Ohio, USA) from 10am-8pm Eastern time USA, Monday through Friday. Competing services that also have CFS discussions are GEnie (for subscriptions phone 1-800-638-9636) and Prodigy (phone 1-800-776-3449). Don't forget Fidonet's CFS Echo (free of charge). And Internet's CFS-L (also available as newsgroup alt.med.cfs. See the file CFS-RES.TXT mentioned in the endplate below for further details about these services.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>5. EI/MCS discussion created on Fidonet A Fidonet "Echo" (discussion) has been created for Environmental Illness / Multiple Chemical Sensitivities issues. The echo moderator is Ginny Kloth. It will be some time before the EI-MCS echo qualifies to be on the Fidonet backbone (from where it will be easily accessible to most Fidonet BBSs), so those who would like to participate will need to ask their local Fidonet sysop to get the echo directly from its originating point at the Project ENABLE BBS (node 1:279/14) at telephone 1-304-766-7842 (West Virginia, USA), at least until it gets on the backbone. Those who dial in directly to the Project ENABLE BBS in order to get to the echo should enter the command JOIN 173 at the main menu. -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>6. Haworth publications update Dr. Jay Goldstein's long-awaited book on limbic encephalopathy & CFS is available now from Haworth Press in a "docu-serial" format. However, Haworth staffers recommend that most customers will prefer to buy the standardly-bound version of the book which will be available in mid-June, both in hard- and soft-cover. CFS-NEWS will feature descriptive and purchasing information for the book in its next issue when the "standard" version is available. Also, the medical Journal of Chronic Fatigue Syndromes is expected to begin publication in September. CFS-NEWS will have a detailed article about this as the time for publication draws closer. Dr. Jay Goldstein will be the editor of another Haworth journal, rather than for this one as originally planned. The newly assigned editor of the Journal of Chronic Fatigue Syndromes will be Dr. Nancy Klimas of the University of Miami Medical School. [Information provided by Haworth Press.] ******************************************************************************