Motor Neurone Disease - Bob Broedel's ALS Digest

I have found that Bob Broedel's ALS Digest has given me great comfort. Bob will, on request, send the digest by e-mail to patients, doctors etc. HERE IS AN EXTRACT FROM DIGEST #242 Bob Broedel's ALS DigestReturn-Path: bro@huey.met.fsu.eduDate: Sun, 7 Apr 96 22:40:58 EDTFrom: Bob Broedel bro@huey.met.fsu.edu,ORals@huey.met.fsu.edu Subject: ALSD242 ALS-ON-LINE =============================================================== == ALS Interest Group == == ALS Digest (#242, 07 April 1996) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ------ maladie de Charcot == == == == 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. The ALS Digest is published (approximately) weekly. Currently there are 1680+ subscribers. == == To subscribe, to unsubscribe, to contribute notes,etc. to ALS Digest, please send e-mail to: == == bro@huey.met.fsu.edu (Bob Broedel) == == Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA == =============================================================== == Back issues of the ALS Digest are available on-line at: Back issues of the ALS =============================================================== == A full set of back issues (on MSDOS 3.5 INCH HD diskette) are available by sending me your full mailing address.They are free-of-charge. International requests welcome. =============================================================== CONTENTS OF THIS ISSUE: 1 .. Editorial 2 .. questions from India 3 .. human neurturin 4 .. Is there an Atkinson update? 5 .. support offered 6 .. New List: Clinical Research Coordination Discussions 7 .. a question re: Rilutek and advanced ALS 8 .. Social Security 9 .. snake venom, PROven, Horvi MS9, etc. 10 . snake venom 11 . ALS & WW2 vets in South Pacific 12 . Blus Cross Blue Shield SAMPLE ARTICLE SNAKE VENON In the 1970s, there was particular interest, accompanied by a great deal of public controversy, in the purported effectiveness of modified snake venon mixture (see references 1 and 2 ). Based on observations that certain snake venons block the action of polio virus on the anterior horn cells, patients were treated with an inactivated venon from the cobra (Naja siamensis) and krait (Bungarus multicinctus), and significant benefit was purported to be observed. After an average treatment of fourteen months, 52 out of 113 ALS patients were reported as stabilized and 13 as improved. During the later 1970s, many ALS patients went to Florida for treatment with snake venon. To evaluate the benefit of this unconvential therapeutic agent more carefully, Tyler completed a carefully controlled, double-blind study (see reference 3). No therapeutic benefit occurred with snake venom. Of considerable interest was the observation that over one-third of the patients had temporary improvement whether they were on placebo or the ineffective experimental drug. Snake venom is an example of how an unorthodox treatment may have some rationale, i.e., blocking the action of polio virus on anterior horn cells, plus a major placebo effect that produces what seems like a significant clinical response. This was an unorthodox treatment that bordered on medical respectability, and subsequently led to an NIH-funded clinical trial. In reviewing many of the treatments for ALS in the past, there have been a number of agents that one might consider to have been less rational, and perhaps be even more unorthodox than snake venon. Nonetheless, looking back over fifteen years, snake venom still stands out as the prototype of an unorthodox treatment that not only received much publicity, but for which ALS patients spent a good deal of valuable time and money. < rest of chapter not included > References: (1) Sanders M, Fellowes ON. A therapeutic approach to neuromuscular disease. Proc 3rd Internat Cong Neuromuscular Dis. Newcastle-Upon-Tyne: 1974 (2) Sanders M, Fellowes ON. Use of detoxified snake neurotoxin as a partial treatment for amyotrophic lateral sclerosis. Cancer Cytol 1975, 15:26-30. (3) Tyler HR. Modified snake venom therapy in motor neuron disease: a double- blind study. Neurology 1979, 29:77-81. Support for Irish MND sufferers and their families can be got from. The Irish Motor Neurone Disease Association based at Carmichael House, North Brunswick Street, Dublin 7, Ireland. FREEPHONE:1800-403-403 Tel:01-8730422 Fax:01-8735737 Home Page