=============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#97, 24 April 1994) == == == == ------ 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 == == 230+ subscribers. == == == == To subscribe, to unsubscribe, to contribute notes, == == etc. to ALS Digest, please send e-mail to: == == bro@huey.met.fsu.edu (Bob Broedel) == == Sorry, but this is *not* a LISTSERV setup. == == == == Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA == =============================================================== CONTENTS OF THIS ISSUE: 1 .. ALS, new drugs, and double-blind method 2 .. re: Month 8 on Riluzole (maybe) 3 .. IGF-1 4 .. Neurology List Server 5 .. anti-glutamate therapy / lamotrigine 6 .. CNTF (1) ===== ALS, new drugs, and double-blind method ========== Date : Sat, 23 Apr 1994 01:23:52 -0400 (EDT) >From : Mark Lewis Subject: ALS, new drugs, and double-blind method A friend of mine who has ALS (she is had the disease for over four years now) is a lawyer with the Ontario Ministry of Citizenship. Her job is to advise the provincial government on how it might best empower those who in the past have been discriminated against because of their race, sex or disability. Because of her position with the government and her connections as a lawyer, she has been able to get various drug and physio- therapy treatments that are generally unavailable to most ALS patients - a fact which has bothered her greatly. As a result, her current crusade involves trying to have one of the drugs now undergoing double-blind testing in Canada made available to patients now, as allowed by the Canadian govern- ment under its "compassionate access" guidelines. The French-based pharmaceutical company (its name escapes me at the moment) that produced the drug is unwilling to do so, sighting the threat its widespread availabilty would have on their test results. I have just recently come upon the existance of your mailing list, and I was wondering if you and your fellow list members had ever discussed the ethics of double-blind testing in the case of drugs meant for patients with diseases like ALS, where even the tiniest hope outways any thoughts of possible side effects in the long term - since, in the case of most ALS patients, the notion of "long term" doesn't even exist. Any thoughts you might have would be appreciated, and I will pass them on to my friend Susan. Thank you for listening. Mark Lewis (mal@io.org) Date : Sun, 24 Apr 1994 03:03:05 -0400 (EDT) >From : Mark Lewis Subject: Re: ALS, new drugs, and double-blind method Hello Bob - Thanks for the quick reply. By all means include my note in the next issue of the Digest, and add my name to the distribution list. Any information I can pass on to Susan about the discussions going on on behalf of ALS patients on the Internet and elsewhere would I'm sure help her personally and in her work. I'm pleasantly surprised to hear that there is a conference on Prodigy discussing ALS, although I don't expect to have access to it in the near future. If you find any relevant information there, I'd appreciate it if you would forward it to me via e-mail address, or, if you like, you can fax the info directly to Susan Conrad at 1-416-314-8935. You probably have heard about the case here in Canada where Sue Rodrigues, an ALS patient, fought a court battle for the right to die through doctor assisted suicide. Although she lost her case in the Supreme Court, she did eventually take her own life. I pray that, with the work of people like yourself and my friend Susan, no more ALS patients will give up hope and the will to fight this awful disease. All my best. Mark Lewis. (2) ===== re: Month 8 on Riluzole (maybe) ========== Date : Wed, 20 Apr 94 13:17:39 MST >From : "gnicholas" Subject: Re: Month 8 on Riluzole (maybe) Doug, My sincerest congratulations on this wonderful milestone. I'm very grateful that you chose to share this information with the ALS Interest Group. May I ask a few questions? These are based on my Dad's experiences with CNTF. He has experienced all the symptoms listed in this forum and other media, to the extent that we have a high degree of confidence in our belief that he is getting CNTF, not a placebo, and in a fairly high dosage. 1.) Have you had any adverse reactions to the drug? 2.) Is your strength test based on self articulation or is someone stimulating your limbs electrically? 3.) Is there any explaination of the continued lose of strength in your legs? 4.) How is the drug administered? Thanks for your time and consideration. Regards, Grant (3) ===== IGF-1 ========== TOKYO, April 20 (Reuter) - Japanese chemical firm Kyowa Hakko Kogyo Co Ltd and Cephalon Inc of the U.S. have started joint development of Myotrophin (IGF-1) in Japan, a Kyowa Hakko spokesman said. Under an agreement originally announced in July 1993, Kyowa will fund development in Japan and pay Cephalon undisclosed licensing fees. Cephalon is also conducting trials of the drug, used to fight amyotrophic lateral sclerosis (ALS), in 16 centres in North America and Europe. (4) ===== Neurology List Server ========== Date : Thu, 21 Apr 94 17:31:00 EST >From : "Michael H.Rivner, M.D." To : gmalet@surfer.win.net, le07144@UKANVM.CC.UKANS.EDU Subject: Neurology List Server Gary and Lee, I came across you Medical List of Listservers which I found very interesting. I would like to make you aware of our listserver--NEURO. The purpose of this listserver is to allow Neurologists a forum to discuss interesting problems and cases in Neurology. The EMAIL address is: Neuro@emgmhs.mcg.edu Subscribe with the command: Subscribe Neuro Systems operator is: Michael Rivner, M.D. Rivner@emgmhs.mcg.edu Thanks ======================================================================== Lee Hancock || Archie R. Dykes Library Educational Technologist || 3901 Rainbow Blvd. University of Kansas Medical Center || Kansas City, KS 66160-7181 || (913) 588-7144 Bitnet - LE07144@UKANVM || Internet - LE07144@UKANVM.CC.UKANS.EDU || "Knowledge is nothing if not || shared"... Me Owner & Editor: Internet/BitNet Health Science Resources List Owner CPRI-L (Listserv@ukanaix.cc.ukans.edu) Computerized Patient Records HMATRIX-L (Listserv@ukanaix.cc.ukans.edu) Online Health Resources ------------------------------ (5) ===== anti-glutamate therapy / lamotrigine ========== ================================================ Title : Anti-glutamate therapy in amyotrophic lateral : sclerosis: a trial using lamotrigine. Author : Eisen A; Stewart H; Schulzer M; Cameron D Source : Canadian Journal of Neurological Sciences : 1993 Nov;20(4):297-301 Abstract : Glutamate excitotoxicity is implicated in the pathogenesis of amyotrophic lateral sclerosis (ALS). We report the results of a double blind, placebo controlled, trial using 100 mg of oral daily lamotrigine (3,5-diamino-6-(2,3 dichlorophenyl)-1,2, 4-triazine) which inhibits glutamate release. 67 patients were entered and at trial termination of 1.5 years 15 had withdrawn (9 active and 6 placebo) and 12 had died (6 active and 6 placebo). Mean age at entry was 57.5 years for the active and 58.6 years for the placebo groups. Patients were seen at 3 monthly intervals and scored according to neurological deficit based upon age of onset, bulbar and respiratory involvement, ambulation and functional disability. The mean change in clinical scores for the active versus placebo groups over the trial period was 7.1 +/- 3.3 and 9.0 +/- 3.3 respectively (0.05 < p < 0.10). Changes in cortical threshold and MEP/CMAP ratios to magnetic stimulation also did not differ significantly between the two groups. We conclude that lamotrigine in the doses administered does not alter the course of ALS. (6) ===== CNTF ========== ================================================= Title : Ciliary neurotrophic factor: pharmacokinetics and : acute-phase response in rat Author : Dittrich F; Thoenen H; Sendtner M Source : Annals of Neurology 1994 Feb;35(2):151-63 Abstract : Ciliary neurotrophic factor (CNTF) supports the survival of motoneurons in vitro and in vivo. Recombinant CNTF is an investigational drug for the treatment of amyotrophic lateral sclerosis. We determined the pharmacokinetics of radioiodinated CNTF after intravenous injection into rats. CNTF shows a biphasic clearance with an initial plasma half- life of 2.9 minutes and is removed from the circulation by the liver. No accumulation of radioactivity was detectable in nerve tissue or skeletal muscle after intravenous injection of 0.1 microgram and 0.5 microgram of CNTF. Radioactive degradation products accumulate in the skin. Liver cells express specific binding proteins for CNTF, and the incorporation and degradation of intravenously injected CNTF by the liver may occur after association of CNTF with the soluble CNTF receptor alpha in the circulation. Probably as a consequence of its binding to hepatocytes, CNTF induces acute-phase responses in liver. The short half-life and the inflammatory side effect may limit the clinical usefulness of systematically administered CNTF in the treatment of human motoneuron disorders. ============================================== == end of als 97 ==