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. 30 January 8, 1994 Washington DC -------------------------------------------------------------------- MEDICAL PUBLICATIONS UPDATE / MAY 12 CAMPAIGN BEGINS CONTENTS >>>1. Medical publications update >>>2. May 12 Campaign begins >>>3. Networking News -- BBSs in New York, Illinois, California ------------------------------------------------------------------- >>>1. Medical publications update The following was contributed by Mr. Steve Clancy, the sysop of the Wellspring BBS which is a service of the Biomedical Library of the University of California at Irvine.] This CFS UPDATE is a review of the current medical literature on Chronic Fatigue Syndrome and is presented as a public service by the Wellspring RBBS. The presence or absence of any information in this review should not be taken as advocating one method of treatment over another, and should not be construed as providing medical advice or diagnosis. The references may be taken from various sources and should be used for educational purposes only. Databases accessed may include the MEDLINE online database produced by the National Library of Medicine, as well as other online and print sources. This listing is NOT a complete review, but represents a selection. Further information may be obtained from the U.C. Irvine, Biomedical Library, or from your local medical library. STEVE CLANCY, M.L.S., WELLSPRING RBBS (714) 856-7996 (714) 846-5087 (714) 725-2700 VOICE (714) 856-7309 ******************************************************************** (NOTE: Articles with title in brackets [ ] are not in English.) -------------------------------------------------------------------- 12/21/93 1. Kiener S. [A case from practice (279). Schweizerische Rundschau fur Medizin Praxis, 1993 Oct 12, 82(41):1142-3. UI: 94023643. 2. Lieberman J; Bell DS. Serum angiotensin-converting enzyme as a marker for the chronic fatigue-immune dysfunction syndrome: a comparison to serum angiotensin-converting enzyme in sarcoidosis. American Journal of Medicine, 1993 Oct, 95(4):407-12. UI: 94027119. 3. Ewig S. [The chronic fatigue syndrome]. Deutsche Medizinische Wochenschrift, 1993 Sep 24, 118(38):1373-80. UI: 94008478. 4. Heuft L; Bravenboer B; Ziekenhuis C. Functional hypoglycaemia postulated as cause of chronic fatigue syndrome [letter]. Bmj, 1993 Sep 18, 307(6906):735. UI: 94004341. 5. Kilburn KH. Symptoms, syndrome, and semantics: multiple chemical sensitivity and chronic fatigue syndrome [editorial]. Archives of Environmental Health, 1993 Sep-Oct, 48(5):368-9. UI: 94029185. 6. Weiger WA. Chronic fatigue syndrome [letter]. Neurology, 1993 Sep, 43(9):1866-7. UI: 94020343. 7. Hyyppa MT; Lindholm T; Lehtinen V; Puukka P. Self-perceived fatigue and cortisol secretion in a community sample. Journal of Psychosomatic Research, 1993 Sep, 37(6):589-94. UI: 94016011. 8. Barnes CL; Fleming CA; Poinsett-Holmes K; Kennedy LD. Chronic fatigue syndrome: what are the facts? Journal of Practical Nursing, 1993 Sep, 43(3):24-31; quiz 32-4. UI: 94015985. 9. Gibson H; Carroll N; Clague JE; Edwards RH. Exercise performance and fatiguability in patients with chronic fatigue syndrome. Journal of Neurology, Neurosurgery and Psychiatry, 1993 Sep, 56(9):993-8. UI: 94015125. 10. St. Clair EW. New developments in Sjogren's syndrome. Current Opinion in Rheumatology, 1993 Sep, 5(5):604-12. UI: 94001366. 11. Walker EA; Katon WJ; Jemelka RP. Psychiatric disorders and medical care utilization among people in the general population who report fatigue. Journal of General Internal Medicine, 1993 Aug, 8(8):436-40. UI: 94015551. 12. Preedy VR; Smith DG; Salisbury JR; Peters TJ. Biochemical and muscle studies in patients with acute onset post-viral fatigue syndrome. Journal of Clinical Pathology, 1993 Aug, 46(8):722-6. UI: 94013555. 13. Smith AP; Behan PO; Bell W; Millar K; Bakheit M. Behavioural problems associated with the chronic fatigue syndrome. British Journal of Psychology, 1993 Aug, 84 ( Pt 3):411-23. UI: 94005500. 14. Connolly S; Smith DG; Doyle D; Fowler CJ. Chronic fatigue: electromyographic and neuropathological evaluation. Journal of Neurology, 1993 Jul, 240(7):435-8. UI: 94015175. 15. Bojic I; Mijuskovic P; Lilic D; Kuljic-Kapulica N; Mijuskovic Z; Berger S; Mitrovic D. [The chronic fatigue syndrome associated with Epstein-Barr virus infection]. Vojnosanitetski Pregled, 1993 May-Jun, 50(3):304-7. UI: 94025679. 16. Stockdale T. Chronic fatigue syndrome (ME) [letter]. Nutrition and Health, 1993, 9(1):59-60. UI: 94020575. 17. Bowles NE; Bayston TA; Zhang HY; Doyle D; Lane RJ; Cunningham L; Archard LC. Persistence of enterovirus RNA in muscle biopsy samples suggests that some cases of chronic fatigue syndrome result from a previous, inflammatory viral myopathy. Jornal do Medico, 1993, 24(2-3):145-60. UI: 94014817. -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>2. May 12 Campaign begins [The following is the January press release of the RESCIND organization which has been created to promote May 12 as International Awareness Day for CFS/CFIDS/ME. The date May 12 is the birthday of Florence Nightingale, who suffered from a debilitating and undiagnosed illness for many decades of her life which, some speculate, may have been a precursor to, or in fact the very same disease as, the CFS illness that we know today .] MAY 12: International CFIDS/ME Awareness Day "Turning The Spotlight On Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephalomyelitis" January 1994 Press Release With the May 12th International CFIDS/ME Awareness Day now just four months away, many CFIDS/ME groups are beginning to plan activities to mark the event. From January 1994 through May 1994, RESCIND, Inc. will be issuing monthly press releases, divided into three sections, to help keep everyone informed concerning the planning that is going on worldwide for the event. The "MAY 12 News" section of each press release will present updates on the involvement of various CFIDS/ME groups in MAY 12 activities. The "MAY 12 Action" section will outline what individuals should do to mark the event. Lastly, the "Contacting RESCIND, Inc." section will offer various ways of reaching RESCIND so people can convey activities or action ideas for inclusion in upcoming MAY 12 press releases. I. MAY 12 NEWS In the USA, The CFIDS Association of America has endorsed May 12 as International Awareness Day for the illness. The Association's renowned publication "The CFIDS Chronicle" featured a promotion of MAY 12 in its November edition on page 51. The CFIDS Activation Network (C.A.N.) of metropolitan New York is spearheading a national petition drive in coordination with MAY 12. The petitions will be presented to the U.S. Congress on that day. To get copies of the petition please contact C.A.N. at P.O. Box 345, Larchmont, New York 10538 or at telephone. (212) 627-5631 or fax (914) 636-6515. C.A.N. is also promoting the use of blue ribbons as a symbol of the CFIDS/MAY 12 movement. In Canada, The National ME/FM Action Network has announced that it will be participating and has appointed Paul Walker, the organization's Vice President, as their national coordinator for the event. Paul can be reached at: 139 Beech Fern Drive, Stittsville, Ontario K2S 1E2 CANADA Telephone: (613) 836-3466. Aidan Walsh, of Montreal, Quebec is coordinating a "walk" on Parliament Hill in Ottawa, Ontario which will be an all-day event. Please contact Paul Walker at the address above for more information. The Myalgic Encephalomyelitis Association of Halton and Hamilton- Wentworth endorsed the MAY 12 event for the second consecutive year in the pages of their December 1993 "M.E. And You" newsletter. Contact: The Myalgic Encephalomyelitis Association of Halton/Hamilton-Wentworth, 762 Upper James Street, Box 143, Hamilton, ONT Canada L9C 3A2 Phone: (905) 383 4431. On the computer networks, an exchange of MAY 12-related messages has been established between major networks. Volunteers will exchange messages that contain new recommendations for MAY 12-related activities. News of specific plans for MAY 12 events should be conveyed to RESCIND at Internet address m.straznitsk@genie.geis.com or mailed to its postal address (see section three "Contacting RESCIND, Inc.") Specific instructions for posting these messages on the different networks are as follows. On Prodigy, [JUMP] Medical Support, choose the topic Chronic Fatigue Syndrome, and then add your message to the "May 12 Awareness Day" subject. On Fidonet, post to the CFS echo and insert the characters "MAY12:" in the beginning of your message's subject. Similarly, on Internet's CFS-L discussion group, place "MAY12: " in the subject. On GEnie, on page 970 in the disAbilities Roundtable in category 1, post to the "May 12: Your Ideas Needed" topic (number 9). On CompuServe, GO GOODHEALTH and in section 17 for Self-help/support, enter "MAY12:" as the beginning of your subject. On America Online, go to the Better Health and Medical Forum, click on Organizations and disabilities, click on the disabilities message area, go into the General Discussions/Chronic Fatigue Syndrome and insert "MAY12: " in your message's subject. To get information about CFS/CFIDS/ME Computer networking, send a stamped, self-addressed envelope (or outside the USA send an International Reply Coupon) to The CFS/ME Computer Networking Project, P.O. Box 2397, Washington, DC 20013 USA. Much more international MAY 12 news will be announced in upcoming press releases! II. MAY 12 ACTION The strength of the MAY 12 event lies in the fact that it offers individuals around the world an opportunity to communicate about the devastation that is CFIDS/ME ON THE SAME DAY. It is important to remember that if the government receives ten letters a day for thirty days, it won't get their attention nearly as much as getting 300 letters all on the same day. There is a real power in numbers and this is why the annual MAY 12 event is so promising. Last year over 40,000 letters and phone calls reached Washington DC alone on May 12, 1993 and the MAY 12 campaign had barely started as it was in its inaugural year. We will surely achieve MUCH more this year! Best ways to communicate: In all communications, be sure to be polite and brief, but to the point. The two main points to make are that (1) CFIDS/ME is a serious illness that is often disabling, and (2) more government research funds need to be allocated for CFIDS studies. And don't just rely upon yourself. Get your close friends and family (anyone who cares about you!) to do some communicating ON May 12. - Personal letters / Faxes -- Individualized personal letters are what public officials respond to BEST. Please write a personal letter if you can. However, many of us may be too sick to write and send these, so note the suggestions for form letters and other communications below. Send correspondence by postal mail two or three days before May 12, or better yet, send by fax on May 12. - Form letters -- RESCIND will be developing its own suggested form letters in the near future, which will be distributed. Also, please contact your local support organization for May 12 form letters that they might have. - Phone calls -- Again, be sure to be polite and brief, but to the point. Who to communicate to: Each of us has a different energy level, so contact as many of the following officials as you are able. If you begin writing several letters now, you may be able to save up quite a number by early May. Be sure to mail all of your letters together, just before May 12. For addresses/phones/faxes for national officials, see the resource list which follows. For legislators and public health officials in your local area, please research their contact information by telephone (or perhaps your local support organization has already compiled that information). RESCIND suggests the following list of priorities for the May 12 campaign: (1) The President or Prime Minister of your country (2) your national legislators in Congress or Parliament (3) your national public health officials (4) similar officials at the local level: - your state governor or provincial leader, and your city mayor - your local legislators at the state, provincial, county or city level - public health officials at the state, provincial, county or city level (5) national and local media: news directors for TV and radio networks and local stations; editors of national newsmagazines and city newspapers Special Projects: CFIDS/ME organizations from around the world are sponsoring various events (see "MAY 12 News" section). In addition, you may chose to act on your own on the following projects: - get friends, family, schools, churches, senior centers, etc. to participate in as much phoning/faxing/letter writing (described above) as possible. - develop several May 12 form letters for your local support group, to be used by those who don't have the energy to compose their own letters. - develop a "Media Kit" to be sent to all local TV and radio stations and local newspapers in advance of May 12. - if you have a local M.D. who is very knowledgeable about CFIDS/ME, try to arrange to get them on local TV or radio news shows to be broadcast that day; perhaps include an eloquent patient to be part of the panel. Local media should be contacted by April 1, while national media should be contacted by February 1. - start working now to get your local legislatures to pass a resolution declaring May 12 as CFIDS/ME Awareness Day. (Do this at the state/provincial and county and city levels). Resource List: We will be compiling postal addresses and other information to add here in the weeks to come. USA President William J. Clinton 1600 Pennsylvania Avenue NW Washington, DC 20500 public comment telephone line: (202) 456-1111 (9 AM to 5 PM Eastern time; bypass the survey and wait for an operator to take your comment) fax: (202) 456-2461 Members of Congress -- Identify your local representatives by referring to your local telephone book, or by calling your county Board of Elections or your public library. Please telephone or fax your local Congressperson at his/her local office. Contact your member in the House of Representatives and both of your state's two Senators. Or send them mail as follows: Hon. United States Senate Washington, DC 20510 or Hon. United States House of Representatives Washington, DC 20515 Donna Shalala Secretary of Health and Human Services 200 Independence Ave. SW Room 719H Washington, DC 20201 Telephone: (202) 690-6867 Fax: (202) 690-6608 Dr. Harold Varmus Director of the National Institutes of Health Bldg. 31 Room 2B25 9000 Rockville Pike Bethesda, MD 20892 Telephone: (301) 496-2535 Fax: (301) 496-0017 Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Diseases Bldg. 31 Room 7803 9000 Rockville Pike Bethesda, MD 20892 Telephone: (301) 496-5717 Fax: (301) 496-0017 Dr. David Satcher Director of the Centers for Disease Control and Prevention MS-A23 1600 Clifton Road NE Atlanta, GA 30333 Telephone: (404) 639-3534 CANADA Prime Minister Jean Chretien Telephone: (613) 992-4211 Fax: (613) 941-6900 We are told that the public health officials at the provincial level are particularly important in Canada, and we will be compiling contact information for them in the weeks to come. III. CONTACTING RESCIND, INC. If you are planning a specific effort in conjunction with this global event, or have an idea for MAY 12 action, please contact: RESCIND, Inc., 127 West Putnam Avenue, #170, Greenwich, CT 06830 Fax (203) 531-4135 Internet e-mail: m.straznitsk@genie.geis.com . Information can then be included in these monthly press releases and spread throughout the CFIDS/ME community. Please note that the deadline for each month's MAY 12 press release is the first of each month (i.e. all submissions must be received by RESCIND, Inc. by February 1, 1994 for inclusion in the February press release). RESCIND, Inc. is a new organization operating with very modest funding and depends solely on donations to cover the expenses involved with promoting the MAY 12 event. RESCIND needs your help. All donations are tax deductible in the USA. Thanks to our Communications Director Matt Straznitskas for compiling the RESCIND press release, and for designing the MAY 12 and RESCIND logos. And special thanks to Roger Burns, Sandy Shaw, Molly Holzschlag, Maryka Ford, Melissa Kaplan, and the many others who submitted ideas and information for this press release. RESCIND Inc. has received hundreds of responses and thanks everyone for their input! -------------------------------------------------------------------- REPEAL EXISTING STEREOTYPES ABOUT CHRONIC IMMUNOLOGICAL AND NEUROLOGICAL DISEASES RESCIND, Inc. "Relentless Pursuit of the Truth" 127 West Putnam Ave. Number 170 Greenwich, CT 06830 USA Board of Directors ------------------ Thomas M. Hennessy, Jr. Giovanna Del Deo President Secretary Michael J. Dubilier Gregory A. Copp, C.P.A. Executive Vice President Treasurer David Samelman Matt Straznitskas Vice President Communications Director [The text above was taken from the CFS Newswire service and was originally posted by Matt Straznistkas. To subscribe to the CFS Newsire service on Internet, send the command SUB CFS-WIRE YourFirstName YourLastName as an e-mail message to the address LISTSERV@SJUVM.STJOHNS.EDU . On the Fidonet BBS network's CFS "echo" read messages from, and post messages to, the name NEWSWIRE.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>3. Networking News -- BBSs in New York, Illinois, California In New York, the "CFS/ME/FMS BBS of Long Island" has been set up by Marcella Feinsod and has many CFS information files and news items available. Dial in to 1-516-736-6810. In northern Illinois, the "CFS Support System" has been created by Darryl Hays and can be reached at 1-815-433-6959. In Los Angeles, California, Camilla Cracchiolo has set up a CFS files area on her "Shrine of the Cybernetic Madonna BBS" which can be reached at 1-213-766-1356. =================================================================== CFS-NEWS (ISSN 1066-8152) is an international newsletter published and edited by Roger Burns in Washington D.C. It is distributed: through the "CFS echo" (discussion group) on the Fidonet volunteer network of BBSs; via the NIHLIST Listserv on Internet; and as USENET Newsgroup bit.listserv.cfs.newsletter. Back issues are on file on the Project ENABLE BBS in West Virginia USA at telephone 1-304-759- 0727 in file area 22, and the valuable patient resource file named CFS-RES.TXT is available there too. Suggestions and contributions of news may be sent to Roger Burns at Internet CFS-NEWS@LIST.NIH.GOV or by Fido NetMail to 1:109/432, or at telephone 1-202-966-8738, or postal address 2800 Quebec St NW, no. 1242, Washington DC 20008 USA, or post a message to the CFS echo or to the Internet CFS-L group or to newsgroup alt.med.cfs. Copyright (c) 1994 by Roger Burns. Per- mission is granted to excerpt this document if the source (CFS-NEWS Electronic Newsletter) is cited. Permission is also granted to reproduce the entirety of this document unaltered. This notice does not diminish the rights of others whose copyrighted material as so noted may be quoted herein. Note that Fido and Fidonet are registered marks of Tom Jennings and Fido Software. =================================================================== INTERNET users are encouraged to obtain the CFS-RES TXT resource file and other CFS files at the NYSDH file server. Send the command GET CFS-RES TXT (or for a full list of files, send GET CFS-D FILELIST) by Internet e-mail to the address LISTSERV%ALBNYDH2.BITNET@ALBANY.EDU . Distribution of CFS-NEWS on the Internet is sponsored by the NIH Computing Utility. However, the content of this independent newsletter and the accuracy of the sources which it cites are solely the responsibility of Roger Burns. To subscribe, send the command SUB CFS-NEWS to the address LISTSERV@NIHLIST.BITNET or LISTSERV@LIST.NIH.GOV . To get back issues, send GET CFS-NEWS INDEX to either the Listserv at list.nih.gov or at the Albany address cited above, and follow the instructions in the file. Anonymous ftp available from list.nih.gov (128.231.64.10), directory cfs-news. ===================================================================== ******************************************************************************