: TO : MTS@gnv.ifas.ufl.edu ............ Tom Sanford : murray@sumax.seattleu.edu ....... MaryAnne Murray : stever@tessi.com ................ Steve Rintala : SMIRNES@IMIHSRA.BITNET .......... S. Palazzi, MD : PHIP@TEMPLEVM.BITNET ............ Tina Phipps : RRICCIUT@WCU.BITNET ............. Rae Ricciuti : andrew@uaneuro.uah.ualberta.ca .. Andrew Penn, MD : IEQZ96M@TJUVM.BITNET ............ Michele Lee : sissi@tinman.gene.com ........... Sissi Tchehrazi : linda@nuhub.acs.northeastern.edu Douglas Hanson : smith@alexia.lis.uiuc.edu ....... Linda Smith : Jim.Knox@um.cc.umich.edu ........ Jim Knox : Tom.Butts@um.cc.umich.edu ....... Tom Butts : Lori.Nelson@Forsythe.Stanford.edu Lorene Nelson : E1.R17@STANFORD.BITNET .......... Bob Hess : Norm_Oliver%NINDS31%NIH@fedtcp.ninds.nih.gov Norman Oliver : dlmc@med.unc.edu ................ David McIlwain : FROM: broedel@geomag.gly.fsu.edu ...... Bob Broedel : RE : ALS DISCUSSION GROUP : > >Date : Fri, 22 Jan 93 11:32:14 EST >From : dlmc@med.unc.edu (David McIlwain) >To : broedel@geomag.gly.fsu.edu >Subject: ALS Net > >I would be pleased to participate in the proposed net. >My research at UNC-CH centers on the chemistry of spinal >motorneurons and I am currently studying skin changes >in sporadic ALS. > >Lee McIlwain dlmc@med.unc.edu > ------ > >Date : Wed, 16 Dec 1992 23:51:17 EST >Sender : MEDNETS Medical Telecommunications Networks > : >From : Roger Burns >Subject: Re: ALS & e-mail > >> If I get enough responses I will create directory of contact >> people, computerized bulletin board systems, BITNET/Internet >> discussion groups, etc. that will be freely available to all >> interested people. > >I don't know that posting your message here on MEDNETS alone >will reach all of the people who potentially might be interested >in ALS. You might also post a query to HEALTH-L@IRLEARN. Also, >I've checked the global LISTSERV list and the Internet-List-of- >Lists and there's no ALS or Lou Gehrig's Disease, therefore you >might 1) post a query to NEW-LIST@NDSUVM1 asking if there's >interest in forming an ALS list, and/or 2) send GET NEWLIST >CREATE to LISTSERV@NDSUVM1 and read the file sent to you and >consider whether you might want to create and operate an ALS >list yourself. > >Roger Burns bfu@cu.nih.gov / bfu@nihcu.bitnet >Editor, CFS-NEWS Chronic Fatigue Syndrome Electronic Newsletter > newsgroup: bit.listserv.cfs.newsletter >Listowner, CFS-L discussion > newsgroup: alt.med.cfs >CFS-NEWS and CFS-L, both on LISTSERV at NIHLIST.BITNET or >LIST.NIH.GOV > ------ > >Date: Fri, 15 Jan 93 14:47:16 PST >To : broedel@geomag.gly.fsu.edu >From: "R. D. HESS" > >Dear Bob, > > Would you tell me a little more about your situation? >Does you friend not have the information she needs about >ALS? It took me a while to root it out but you seem to >have tapped the major sources. When was her situation >diagnosed? > By now we have a lot of information. We learned much from the ALS Association and from the local university library. Here are some book titles: HANDBOOK OF AMYOTROPHIC LATERAL SCLEROSIS Edited by Richard Alan Smith 1992, Marcel Dekker, Inc. ADVANCES IN NEUROLOGY, VOL 56 Amyotrophic Lateral Sclerosis and other Motor Neuron Diseases Edited by Lewis P. Rowland 1991, Raven Press, Ltd. AMYOTROPHIC LATERAL SCLEROSIS: CONCEPTS IN PATHOGENESIS AND ETIOLOGY Edited by Arthur J. Hudson 1990, University of Toronto Press But we want to know more about current research, about more practical "hands on" home care information, etc. ... so we want to have e-mail communications with others. My friend Carmen first noticed slurred speech and breathing problems during February of 1992. She was diagnosed as having ALS during July of 1992. We went to Mayo Clinic Jacksonville for a second opinion. We went to University of Miami to see about getting into the clinical trials. At this time Carmen can eat, talk, breath, and walk ... but with much difficulty. > > If there is anything I might do by way of exchanging >information, experiences, and feelings about having ALS >I would be happy to do so. I learned a great deal from >other ALS patients, especially the sort of things that >the M.D.s do not talk about. My situation is a little >unusual in that I lost voice, use a feeding tube but >since the disease is, at this point, confined to the >vocal zone, I still play tennis and get around as well >as before. > > So, without being intrusive, please consider me a >resource if there is anything I might be able to offer. > > As I mentioned in my first e-mess, fax is even easier, >though not quite as inexpensive, as e-mail. I also use >a laptop and voice synthesizer for phone conversations. > We are looking forward to keeping in touch with you. > > I will send along information about SeniorNet soon, >or ask the central office to send it to you. > > Do you think of ways in which the research center >here in S.F. might be involved? Is it reasonable to >establish computer links at such places and perhaps in >health libraries that might be able to tap the BBS files? > > Good thoughts, > > Bob Hess My home phone is 415 327-1266. > I think it would be wonderful if *all* of the research centers were on-line with us. A lot could be learned from them (of course). Anyone with an Internet-compatible e-mail account can be a part of this action. Most universities are on Internet or BITNET already, but anyone else can be an active participant by getting an account on CompuServe, MCI Mail, PeaceNet, Delphi, etc. Health libraries are certainly welcome also. I have already placed an announcement on MEDLIB-L@UBVM.CC.BUFFALO.EDU with hopes of attracting some of them our direction. rgds,bro ------ > >Date: Sat, 23 Jan 93 17:13:06 PST >To : broedel@geomag.gly.fsu.edu >From: "R. D. HESS" > >Hello Bob, > > How are things progresing with the plan for an e-mail >discussion group on ALS? I've put a notice on the Senior >Net ALS SIG asking interested people to contact me and >asked the editor of the local ALS newsletter (S.Francisco >Bay area) to put a similar note in the issue for February. >Is there anything else I might do at this point? > It will be interesting to see what happens with the SeniorNet posting. Recently I made a mailing to ALS oriented groups and newsletters with hopes they will tell others about this effort. > > Not many ALS patients in the S.F. support group have >computers with modems. But the need for information is >severe, so a useful e-mail network might attract some of >them and, even more likely, some of their children or >friends. > > Thanks again for your efforts. Hope your friend is doing >reasonably well. Let me know if I can help in any way. > > Bob Hess > rgds,bro ------ Since Lyme Disease is one of the "mimics" that are screened for during the diagnosis of ALS, the following note may be of interest. > >Date : Sat, 23 Jan 1993 22:52:13 CST >Sender : MEDNETS Medical Telecommunications Networks > : >Comments: Resent-From: Marty Hoag >Comments: Originally-From: Marc Gabriel >Subject : NEW: LymeNet-L - Lyme Disease list > > For your information (from the new-list list): > >LymeNet-L@Lehigh.EDU The Lyme Disease Electronic Mail Network > >Lyme Disease is now the fastest growing infectious disease >in the United States. In 10 short years, this little known >bacterial infection has claimed half a million victims and >the number of new patients continues to spiral upward with >no relief in sight. It is estimated that in 1991, 100,000 >Americans contracted this dangerous disease. If left untreated, >LD can cause permanent nerve, musculoskeletal and cardiac damage. > >Unfortunately, many in the medical and political arenas have not >given this epidemic much thought. Self appointed experts in the >academic community have declared that LD can always be cured with >short courses of simple antibiotics. However, as the number of >cases rise, doctors on the front lines are discovering that LD >is more serious that previously suspected, requiring longer >treatment therapies and more complex combinations of medicines. >The battle lines have been drawn. > >And the battles continue at LD conferences, and in the various >State legislatures where insurance companies, terrified at the >high cost of LD, are attempting to short change patients. >Estimates show that the average cost of treatment for chronic LD >patients ranges from $60,000 to $100,000 per patient. > >MAILING LIST: >To keep up with the latest developments, including new treatment >protocols, research news and political events, we introduce >the Lyme Disease Electronic Mail Network. LymeNet, in association >with the Lyme Disease Network of New Jersey, Inc., with provide >you with a periodic newsletter with the latest information. >All you need is an Internet-accessible e-mail address. > >INTERESTED INDIVIDUALS INCLUDE: > * LD patients > * Friends or family of LD patients, who may wish to forward the > newsletter to an LD patient > * Interested members of the medical community > * Interested members of the press > >To subscribe, send a memo to Internet address listserv@Lehigh.EDU >In the body type: > > subscribe LymeNet-L > > Owner: Marc Gabriel > ------ Here is another list that we may be able to learn from. > >Date : Thu, 21 Jan 1993 07:32:57 EST >Sender : Multiple Sclerosis Discussion/Support > : >From : "L. G. Robinson" >Subject: New Host for MSLIST-L > >The folks at TECHNION have graciously offered to be the new >hosts for this Listserv list. From this moment forward, >postings should be directed to MSLIST-L@TECHNION. Listserv >management commands should be directed to LISTSERV@TECHNION. > >For those of you who are not directly on Bitnet, the >Internet address of TECHNION is "technion.technion.ac.il" > >Special thanks gor out to Chanoch Weil >(ccanacw@technion.technion.ac.il) and Al Hartshorn >(al@ccvs4.technion.ac.il) for making it possible for >this list to continue. > >Please let me or Chanoch know if there are problems. > >My best to you all. >-lil- > == end of als 12 ==