=============================================================== == == == ----------- ALS INTEREST GROUP ----------- == == ALS Digest (#71, 29 November 1993) == == == == ----- amyotrophic lateral sclerosis (ALS) == == ----- motor neurone disease (MND) == == ----- Lou Gehrig's disease == == ----- == == This e-mail list has been set up to serve the world-wide == == ALS community. That is, ALS patients, ALS researchers, == == ALS support/discussion groups, ALS clinics, etc. Others == == are welcome (and invited) to join. Currently there are == == 170+ subscribers. == == == == To subscribe, to unsubscribe, to contribute notes, == == etc. to ALS Digest, please send e-mail to: == == bro@huey.met.fsu.edu (Bob Broedel) == == == == All interested people may "broadcast" messages to == == ALS Digest subscribers by sending to: == == als@huey.met.fsu.edu == == == == Bob Broedel; P.O. Box 20049; Tallahassee, FL 32310 USA == =============================================================== (1) ===== more on Prodding (from the Prodigy group) ========== X-Mailer: America Online Mailer Sender : "jackn74940" Date : Sat, 27 Nov 93 17:38:40 EST Subject : re:Davis response to Prodding Bob please add this letter to the note received concerning Prodding! I passed Dr Davis's letter on to the PROD! and received a reaffirmation from several that this is old news and the choice of taking the drugs that have passed safety trials preferably phase ii are still not available even though FDA regs authorize it. attached is a letter from another clinician/researcher who has ALS. From: A MACPHER I do not think Dr. Davis understands the positions that I have taken (and others) on this bulliten board. Nobody has advocated IND use of drugs before the phase I toxicity studies have been completed. I am not sure I would advocate IND use of drugs during phase II even. But, for drugs that are in phase III (that is what the company considers Riluzole to be in) that is precisely the stage where IND use was designed for. I believe the same is true for CNTF. If Dr. Davis wants to argue that there should be no IND use ever for any drug he should state that. I should point out there are many drugs that have undergone IND usage. Why is it improper for our patient population? In fact, a riluzole company official has said that they do not want to release riluzole for IND usage unless they are pressured politically and/or financially. That is immoral. They will publish a study in the New England Journal of Medicine in January that shows benefit to bulbar onset patients. There are many of these patients who have been refused participation in riluzole trials. The company would like these patients to wait until 1995 (when they anticipate FDA approval) to have access to the drug. For many that will be too late. What is the greater risk, providing these patients with IND usage (which continues to provide data as well as possible benefit) or doing nothing (refusing these patients access to drug trials and allowing the disease to progress along its relentless course)? It is precisely for this group of patients that IND use is intended. What I am advocating is being done and has been done for other diseases. I resent the implication that the ALS population is asking for drugs in an unscientific manner. What I am advocating is that this patient population be treated no differently than other people with terminal diseases. One has to ask what are the motivations behind these actions. Financial motivations, I suspect, are significant. I have been advised that we could wield some power by contacting any mutual fund company, pension plan company or other large institutional investors who own much of the stock within the drug industry and letting them know of our concerns about certain company practices. Remember the FDA has said some of these drugs could be approved for IND use if the companies wanted them to be. Political motivations by some of the research centers are a possibility as well. The TQNE muscle testing system (the only objective way to measure disease progression) has proven valuable as a research tool over many years. Yet, many research centers feel that these tests could not be used to allow patient history controlled trials. Is that because of good science or are there turf battles involved here? My experience in the research community tells me that ego and pride can often get in the way of science. To those of you who will determine if there will be IND usage of riluzole or CNTF, could you look a family member of yours suffering with ALS in the face and, in good faith, tell them they should not be allowed IND usage solely on the basis of supposedly pure science? To those clinicians who are allowing the drug companies to dictate to them all the conditions and restrictions of the drug trials, are you looking out for your patient's best interest or are you trying to maintain your research programs? To the ALS society, are you supporting ALS centers that are more interested in cranking out publications than they are trying to work for the patient's best interest? To those of you who have worked with ALS patients over the years, I realize what a difficult job it has been. I thank you for all your efforts, but now is the time to realize there are drugs that are providing benefit to patients in early testing and must be made available to us dying patients before it is too late. The Quest Continues The PROD! Keep Targeting! Dr Cedarbaum of Regeneron is this week's target. Ask for release of Cntf; testing of BDNF & CNTF combined and ban placebos in the terminally ill, especially ALS! Jesse M Cedarbaum, M.D. VP for Clinical Affairs - Regeneron 28 Pryer Manor Rd. Larchmont, NY 10538 (2) ===== ALS Digest back issues ========== finally, those back issues of ALS Digest are on line (less two issues, but soon ...). Back issues also available via e-mail at LISTSERV@mailer.fsu.edu (INDEX ALS), and via FTP at mailer.fsu.edu (ftp/pub/als). Hardcopy reproductions (with an extensive index) are available from Grant Nicholas (gnicholas@pcgate.lanl.gov). Here is what the search looks like via a Jughead/Gopher search. +-------Search High-level Gopher Menus Using Jughead at W&L U.-----------+ | | | Words to search for: als | | | +------------------------------------------------------------------------+ Searching Text... Connecting... Searching... 1. THE THIRD FIBRONECTIN TYPE III REPEAT OF HUMAN TENASCIN. TE.. 2. ALS [gopher.ncsu.edu] 3. ALS [gopher.ncsu.edu] 4. ALS [gopher.ncsu.edu] 5. ALS [gopher.ncsu.edu] ---> 6. als [gopher.fsu.edu] 7. als [majestix.hrz.tu-chemnitz.de] 8. als [pinus.slu.se] 9. ALS AGRICULTURE AND LIFE SCIENCES [gopher.vt.edu] Receiving Directory... Connecting... Retrieving Directory... 1. alsd01. 2. alsd02. 3. alsd03. 4. alsd04. 5. alsd05. 6. alsd06. 7. alsd07. 8. alsd08. 9. alsd09. 10. alsd10. 11. alsd11. < parts of this example have been deleted> 66. alsd68. 67. alsd69. 68. alsd70. (3) ===== Prodigy and ALS ========== There is an excellent ALS discussion section on the commercial information utility called Prodigy. Now that Prodigy has installed an Internet Gateway, we will be seeing exchanges between our group and the one on Prodigy. Here is a recent note that explains it. ---------------------------------------------------------------- Date : Fri, 26 Nov 1993 14:34:08 -0500 From : Mail Admin Subject: Prodigy/Internet Email Now Available (Prodigy's electronic mail gateway to the Internet is now available -- this message is being sent to you in followup to your earlier query to postmaster@prodigy.com .) (message last updated: Fri Nov 26 13:40:09 1993) Thank you for your interest in the PRODIGY service. Here are the instructions for sending electronic mail to PRODIGY service members. To address mail to a PRODIGY service member, use "abcd12a@prodigy.com" where "abcd12a" is the member's PRODIGY service ID. All PRODIGY service ID's are exactly seven characters long. There are no directory services available to look up PRODIGY service ID's -- if you do not know the IDs of persons to whom you want to send E-mail, you should contact them first via some other means (such as a telephone call). For them to send mail to you, they will need to download the Mail Manager software for reading/writing email offline. (JUMP ABOUT MAIL MANAGER on the PRODIGY service). Incoming email messages should not exceed 60,000 bytes, or they will be returned to the sender. If you experience mail delivery problems that may require action by the administrators of this system, write to "admin@prodigy.com". If you have some other inquiry about the PRODIGY Service (how to join, billing inquiries, complaints, etc) -- please call 800-PRODIGY to speak to our Membership Services. (This message was created automatically -- please do not reply to it) (4) ===== an example search on OMIN ========== The OMIN database is excellent! Here is an example of a search that will be of interest. If any of you do not have full Internet capability, but you want any of the following full-text articles e-mailed to you, please let me know. I will enter the Gopher and have articles you want to read sent to your e-mail address. A few days ago I broadcasted to als@huey the second article that is listed. Hope you found it informative. rgds,bro (bro@huey.met.fsu.edu) +-------------Online Mendelian Inheritance in Man---------------------+ | | | Words to search for: amyotrophic lateral sclerosis | | | +---------------------------------------------------------------------- Searching Text... Connecting... Searching... Internet Gopher Information Client 2.0 Online Mendelian Inheritance in Man: amyotrophic lateral sclerosis 1. Help information on database: omim. 2. #105400 AMYOTROPHIC LATERAL SCLEROSIS [ALS; ALS1]. 3. *191100 TUBEROUS SCLEROSIS [TUBEROSE SCLEROSIS; TSC; TUBEROUS SCLE... 4. *147450 INDOPHENOLOXIDASE A [IPO-A; SUPEROXIDE DISMUTASE-1; SOLUBL... 5. 105500 AMYOTROPHIC LATERAL SCLEROSIS-PARKINSONISM..PD; GUAM DISEASE]. 6. *205100 AMYOTROPHIC LATERAL SCLEROSIS, JUVENILE [ALS, JUVENILE; AL... 7. 126200 DISSEMINATED SCLEROSIS [MULTIPLE SCLEROSIS; MS; MS1]. 8. #158700 MUSCULAR ATROPHY, PROGRESSIVE, WITH AMYOTROPHIC LATERAL SC... 9. 105550 AMYOTROPHIC LATERAL SCLEROSIS WITH DEMENTIA. 10. *205200 AMYOTROPHIC LATERAL SCLEROSIS, JUVENILE, WITH DEMENTIA [AL... 11. 205250 AMYOTROPHIC LATERAL SCLEROSIS WITH POLYGLUCOSAN BODIES. 12. OMIM Gene Map. 13. 167320 PAGETOID AMYOTROPHIC LATERAL SCLEROSIS [PAGETOID NEUROSKELE... 14. *150400 LATERAL INCISORS, ABSENCE OF [PEGGED OR MISSING LATERAL IN... 15. *256370 NEPHROTIC SYNDROME, EARLY-ONSET, WITH DIFFUSE MESANGIAL SC... 16. 191090 TUBEROUS SCLEROSIS-2 [TSC2]. 17. *138245 GLUTAMATE RECEPTOR-5 [GLR5; GLUR5]. 18. *181750 SCLERODERMA, FAMILIAL PROGRESSIVE [SYSTEMIC SCLEROSIS, SUS... 19. *191092 TUBEROUS SCLEROSIS-4 [TSC4]. 20. *300100 ADDISON DISEASE AND CEREBRAL SCLEROSIS [ADRENOLEUKODYSTROP... 21. *166500 OSTEOPATHIA STRIATA WITH CRANIAL SCLEROSIS [HYPEROSTOSIS G... 22. *303100 CHOROIDEREMIA [CHM; TAPETOCHOROIDAL DYSTROPHY, PROGRESSIVE... 23. 191091 TUBEROUS SCLEROSIS-3 [TSC3]. 24. *215500 CHOROIDAL SCLEROSIS. 25. 256350 NEPHROTIC SYNDROME WITH FOCAL GLOMERULAR SCLEROSIS. 26. *272800 TAY-SACHS DISEASE [TSD; GM2-GANGLIOSIDOSIS, TYPE I; B VARI... 27. #313200 SPINAL AND BULBAR MUSCULAR ATROPHY [SBMA; SMAX1; KENNEDY D... 28. OMIM Gene Map - Chromosome 2. 29. OMIM Gene Map - Chromosome 21. 30. *119550 CLEFT PALATE-LATERAL SYNECHIA SYNDROME [CPLS SYNDROME]. 31. 213900 CEREBRAL SCLEROSIS SIMILAR TO PELIZAEUS-MERZBACHER DISEASE. 32. 223300 DISSEMINATED SCLEROSIS WITH NARCOLEPSY. 33. *263570 POLYGLUCOSAN BODY DISEASE, ADULT FORM [APBD]. 34. #105120 AMYLOIDOSIS V [FINNISH TYPE AMYLOIDOSIS; MERETOJA TYPE AMY... 35. 105300 AMYOTROPHIC DYSTONIC PARAPLEGIA. 36. *118945 CILIARY NEUROTROPHIC FACTOR [CNTF]. 37. *138246 GLUTAMATE RECEPTOR-4 [GLUR4; GLR4]. 38. *138247 GLUTAMATE RECEPTOR-2 [GLR2; GLUR2; GLUTAMATE RECEPTOR, KAI... 39. *138248 GLUTAMATE RECEPTOR-1 [GLUR1; GLR1]. 40. *158590 MUSCULAR ATROPHY, ADULT SPINAL [SPINAL MUSCULAR ATROPHY IV... (5) ===== self help groups ========== ------------------------------------------------------------------ Date : Wed, 24 Nov 1993 22:41:45 CST Sender : NEW-LIST - New List Announcements From : Bruce Dienes Subject: NEW: SLFHLP-L - Discussion group for self-help researchers ------------------------------------------------------------------ SLFHLP-L on LISTSERV@UIUCVMD.BITNET Self-Help research discussion group or LISTSERV@vmd.cso.uiuc.edu SLFHLP-L was created to provide a forum for those who are interested in researching self-help / mutual-aid. People from many different fields and backgrounds participate in the list: social workers, community psychologists, socologists, community health workers, self-help clearinghouses, graduate students, and others. The list is used to ask questions or share information on research ideas, designs and methodologies, to report interim or published results, to announce upcoming conferences, to call for publications, and to get to know others who are working in the field. The list is NOT designed to function as an on-line self-help group nor to serve as a referral to self-help groups or organizations. Anyone wanting such information or referral can contact the American Self-Help Clearing House, St. Clares-Riverside Medical Center, Denville, NJ 07834 or by e-mail at edmadara@aol.com Archives of SLFHLP-L and related files are stored in the SLFHLP-L FILELIST. To receive a list of files send the command INDEX SLFHLP-L to LISTSERV@UIUCVMD on BITNET or LISTSERV@VMD.CSO.UIUC.EDU To subscribe to SLFHLP-L, send the following command to LISTSERV@UIUCVMD or LISTSERV@VMD.CSO.UIUC.EDU in the BODY of e-mail: SUBSCRIBE SLFHLP-L yourfirstname yourlastname For example: SUBSCRIBE SLFHLP-L Jane Doe For more information about the list send e-mail to the Owner. Owner: OWNER-SLFHLP-L@UIUCVMD on BITNET or OWNER-SLFHLP-L@VMD.CSO.UIUC.EDU -------------------------------------------------------------------- (6) ===== Call for Papers ========== Date : Tue, 23 Nov 1993 15:18:11 -0500 Sender : International Discussion on Health Research : From : Carlos Bordon Subject: Call for Papers > FIRST ANNOUNCEMENT AND CALL FOR PAPERS > ***************************************************************** > * * > * INTERNATIONAL CONGRESS ON MEDICAL INFORMATICS * > * HAVANA 94 * > * * > * NOVEMBER 8 - 11, 1994 * > * * > ***************************************************************** > > ESTIMATE COLLEAGUES: > > THE ORGANIZING COMMITEE IS PLEASED TO INVITE YOU TO TAKE PART IN > THE "INTERNATIONAL CONGRESS ON MEDICAL INFORMATICS, HAVANA 94" TO > BE HELD IN THE CUBA CONVENTIONS PALACE IN ACCORDANCE WITH THE > ALREADY TRADITIONAL EVERY TWO YEAR MEDICAL INFORMATICS > CONFERENCE. > > THE CONGRESS AIM IS TO PROMOTE THE ENCOUNTER OF USERS AND > DEVELOPERS OF MEDICAL INFORMATICS APPLICATIONS. WE ARE INVITING: > > -HEALTH CARE POLICY MAKERS > -HEALTH CARE SERVICES ADMINISTRATORS > -PHISICIANS > -NURSES > -RESEARCHERS > -INFORMATICS SPECIALISTS > > FOR MORE INFORMATION PLEASE CONTACT: > ################################################################# > # ORGANIZING COMMITEE ADDRESS: # > # # > # C.O. CONGRESO INTERNACIONAL INFORMATICA MEDICA, HABANA 94 # > # CALLE M # 260, VEDADO # > # HABANA 10400 # > # CUBA # > # # > # TELEPHONE: 53-7-329003 / 53-7-321691 # > # FAX: 53-7-333511 / 53-7-331657 # > # E-MAIL SWMEDIC@INFOMED.CU # > ################################################################# > == end of als 71 ==