Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Ben, Thank you for sharing the letter you sent out to the MS Society....... I do believe you said it all! I, myself had called them, about a yr. and a half again, when I first started LDN and saw POSITIVE Results......asking questions such as yours, and no one there would talk to me about LDN, it's benefits, or its future. I was told that because it was not approved, they couldn't get involved. Putting it as you did, asking them to become involved in the Studies, I think was a better way of going about it. Please let us know if you hear anything back from them. Maybe if we all begin writing letters, they'd have to start paying attention! Thank you for putting this out there to them. Know that You are Appreciated. Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 On occassion, I have attempted to make contact with the MS Society in reference to other issues. Surprise surprise!! I never got a response! I was attempting to locate funding for vehicle modifications, which by the way, I have since accomplished without their help! Their goal appears, according to recent TV ads, to be to raise funding for research to find a cure! Again, surprise surprise! A cure would mean no need for research and many highly paid employees would be out of a job!! Ain't ever gonna happen!! I believe that is how it works. I'm not angry, I've just accepted that that is how it is, and I have to be in charge of MY health! Marcie \ In a message dated 4/1/2004 8:59:05 AM Central Standard Time, evansbenjamin@... writes: Subj:[low dose naltrexone] Re: Letter to MS Society Date:4/1/2004 8:59:05 AM Central Standard Time From: evansbenjamin@... (bonzolewdicrus) Reply-to: low dose naltrexone low dose naltrexone Hi Larry, yes I've signed the petition and will get friends to do so as well. Hopefully that will pick up momentum. I'm afraid it might take a government years to execute on that though. Personally I feel the MS Society should have studied this matter long ago. If they are accepting donations from people under the pretense of finding an expedient cure then they have failed us by not having studied it. I've given money to this organization as I'm sure many of you have as well. If I sounded angry in that letter - I am! It upsets me that they have yet to act on this if it works as well as all of you have reported. Hopefully I'll get a respectable reply to my letter after I send it; if I don't then I'll have to question the organization's tru motives. - Ben > Great letter. Have you seen and signed our worldwide petition? http://www.thepetitionsite.com/takeaction/110785607 > > I even created shortcut link to it for easier dissemination: http://www.larrygc.com/ldnpetition (takes you to the same place) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Hi everyone, I'm new to this board and still learning about low-dose naltrexone which I stumbled across a few weeks ago. Everyone here seems to be thrilled by this therapy and so I plan on getting a prescription from my neuro in a few months. The lack of any trial-based evidence compelled me to write a letter to the National MS Society to start a trial. I've composed a rough-draft below. Let me know if there's anything I should add before sending; or if anybody has already tried this approach and if so what response you got. Thanks, Ben Letter to National MS Society Have searched your site and am bewildered that I cannot find even a single mention about low-dose naltrexone treatment despite its current use by thousands of MS patients. Certainly I understand your organization cannot appear to endorse a treatment that has not been studied. However I am amazed that your organization isn’t supporting any research into whether or not it is effective. So many are using it without trial results anyway - and reporting miraculous results! If indeed it does work then tens of thousands of patients are missing out on this incredibly safe and cheap therapy. From my estimate, the cost of a trial would be relatively cheap. According to Dr. Bihari’s website “low dose naltrexone.org”, Copaxone can be used with this therapy. So you could design a trial of about 25 Copaxone/placebo patients in one arm and 25 Copaxone/Naltrexone 4.5mg patients in the other arm. To determine effectiveness, you would only need about three MRIs per patient (one at baseline, one at year one, last at year 2). MRIs are expensive I’m sure but their costs have declined dramatically in recent years from what I understand. I don’t imagine that such a trial would cost more than $500,000. Teva would probably love to help out in the funding since their drug is involved and any positive data would help save profits from the inevitable approval of Antegren. I’m not wealthy but I would even throw $50,000 of my own money just to put this issue to rest. Don’t know for certain that you would reach statistical significance with a trial this small but you would at least see a clear trend towards efficacy or not. When I was diagnosed 2 1\2 years ago, I was only told of the ABC drugs by my neurologist. Doctors are hesitant to prescribe drugs based soley on anecdotal evidence alone. Understandably they need trial-based evidence before they are willing to offer this option to patients. Your website was the first I visited to learn about my disease and I am grateful; but by going to other sites I’m only now learning about a therapy that is harmless and yet may hold the key to a ground-breaking treatment. Since this drug is off-patent the only likely source of funding would have to come from an institution such as yours. The mechanism of action is legitimate and the anecdotal evidence is overwhelming if you listen to those who are using it. Therefore I believe your organization is failing it’s benefactors and it’s mission to find a cure by ignoring this drug which is already on the market. While spending $388,559 to test “Control of EAE-specific T cells through modified peptide interaction with MHC” may lead to a cure 15-20 years from now; why look for a needle in a haystack when you have a good needle already in your hand? Will be seeing my neurologist in a few months and plan on getting a prescription from him or elsewhere. I just think it would be wonderful if newly-diagnosed MS patients could be offered a treatment upfront that might save them from years of disease progression. This treatment could be especially useful for those without insurance who cannot afford $10,000+/year treatments currently available. Please forward this letter to those who determine which projects to fund and let me know if I could help fund it. I think I could even find a trial coordinator for such a project. _________________________________________________________________ Free up your inbox with MSN Hotmail Extra Storage. Multiple plans available. http://join.msn.com/?pgmarket=en-us & page=hotmail/es2 & ST=1/go/onm00200362ave/dire\ ct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 WOW - THANK YOU BEN - WHAT A GOOD IDEA, AND GREAT GENEROSITY. Lynda ----- Original Message ----- From: " " <evansbenjamin@...> <low dose naltrexone > Sent: Thursday, April 01, 2004 7:15 AM Subject: [low dose naltrexone] Letter to MS Society > Hi everyone, I'm new to this board and still learning about low-dose > naltrexone which I stumbled across a few weeks ago. Everyone here seems to > be thrilled by this therapy and so I plan on getting a prescription from my > neuro in a few months. The lack of any trial-based evidence compelled me to > write a letter to the National MS Society to start a trial. I've composed a > rough-draft below. Let me know if there's anything I should add before > sending; or if anybody has already tried this approach and if so what > response you got. > > Thanks, Ben > > Letter to National MS Society > > Have searched your site and am bewildered that I cannot find even a single > mention about low-dose naltrexone treatment despite its current use by > thousands of MS patients. Certainly I understand your organization cannot > appear to endorse a treatment that has not been studied. However I am > amazed that your organization isn't supporting any research into whether or > not it is effective. So many are using it without trial results anyway - > and reporting miraculous results! If indeed it does work then tens of > thousands of patients are missing out on this incredibly safe and cheap > therapy. > From my estimate, the cost of a trial would be relatively cheap. > According to Dr. Bihari's website " low dose naltrexone.org " , Copaxone can be > used with this therapy. So you could design a trial of about 25 > Copaxone/placebo patients in one arm and 25 Copaxone/Naltrexone 4.5mg > patients in the other arm. To determine effectiveness, you would only need > about three MRIs per patient (one at baseline, one at year one, last at year > 2). MRIs are expensive I'm sure but their costs have declined dramatically > in recent years from what I understand. I don't imagine that such a trial > would cost more than $500,000. Teva would probably love to help out in the > funding since their drug is involved and any positive data would help save > profits from the inevitable approval of Antegren. I'm not wealthy but I > would even throw $50,000 of my own money just to put this issue to rest. > Don't know for certain that you would reach statistical significance with a > trial this small but you would at least see a clear trend towards efficacy > or not. > When I was diagnosed 2 1\2 years ago, I was only told of the ABC drugs > by my neurologist. Doctors are hesitant to prescribe drugs based soley on > anecdotal evidence alone. Understandably they need trial-based evidence > before they are willing to offer this option to patients. Your website was > the first I visited to learn about my disease and I am grateful; but by > going to other sites I'm only now learning about a therapy that is harmless > and yet may hold the key to a ground-breaking treatment. Since this drug is > off-patent the only likely source of funding would have to come from an > institution such as yours. The mechanism of action is legitimate and the > anecdotal evidence is overwhelming if you listen to those who are using it. > Therefore I believe your organization is failing it's benefactors and it's > mission to find a cure by ignoring this drug which is already on the market. > While spending $388,559 to test " Control of EAE-specific T cells through > modified peptide interaction with MHC " may lead to a cure 15-20 years from > now; why look for a needle in a haystack when you have a good needle already > in your hand? > Will be seeing my neurologist in a few months and plan on getting a > prescription from him or elsewhere. I just think it would be wonderful if > newly-diagnosed MS patients could be offered a treatment upfront that might > save them from years of disease progression. This treatment could be > especially useful for those without insurance who cannot afford > $10,000+/year treatments currently available. Please forward this letter to > those who determine which projects to fund and let me know if I could help > fund it. I think I could even find a trial coordinator for such a project. > > _________________________________________________________________ > Free up your inbox with MSN Hotmail Extra Storage. Multiple plans available. > http://join.msn.com/?pgmarket=en-us & page=hotmail/es2 & ST=1/go/onm00200362ave/ direct/01/ > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Hi Larry, yes I've signed the petition and will get friends to do so as well. Hopefully that will pick up momentum. I'm afraid it might take a government years to execute on that though. Personally I feel the MS Society should have studied this matter long ago. If they are accepting donations from people under the pretense of finding an expedient cure then they have failed us by not having studied it. I've given money to this organization as I'm sure many of you have as well. If I sounded angry in that letter - I am! It upsets me that they have yet to act on this if it works as well as all of you have reported. Hopefully I'll get a respectable reply to my letter after I send it; if I don't then I'll have to question the organization's tru motives. - Ben --- In low dose naltrexone , " LarryGC " <larrygc@s...> wrote: > Great letter. Have you seen and signed our worldwide petition? http://www.thepetitionsite.com/takeaction/110785607 > > I even created shortcut link to it for easier dissemination: http://www.larrygc.com/ldnpetition (takes you to the same place) > > ----- Original Message ----- > From: > low dose naltrexone > Sent: Thursday, April 01, 2004 07:15 > Subject: [low dose naltrexone] Letter to MS Society > > > Hi everyone, I'm new to this board and still learning about low- dose > naltrexone which I stumbled across a few weeks ago. Everyone here seems to > be thrilled by this therapy and so I plan on getting a prescription from my > neuro in a few months. The lack of any trial-based evidence compelled me to > write a letter to the National MS Society to start a trial. I've composed a > rough-draft below. Let me know if there's anything I should add before > sending; or if anybody has already tried this approach and if so what > response you got. > > Thanks, Ben > > Letter to National MS Society > > Have searched your site and am bewildered that I cannot find even a single > mention about low-dose naltrexone treatment despite its current use by > thousands of MS patients. Certainly I understand your organization cannot > appear to endorse a treatment that has not been studied. However I am > amazed that your organization isn't supporting any research into whether or > not it is effective. So many are using it without trial results anyway - > and reporting miraculous results! If indeed it does work then tens of > thousands of patients are missing out on this incredibly safe and cheap > therapy. > From my estimate, the cost of a trial would be relatively cheap. > According to Dr. Bihari's website " low dose naltrexone.org " , Copaxone can be > used with this therapy. So you could design a trial of about 25 > Copaxone/placebo patients in one arm and 25 Copaxone/Naltrexone 4.5mg > patients in the other arm. To determine effectiveness, you would only need > about three MRIs per patient (one at baseline, one at year one, last at year > 2). MRIs are expensive I'm sure but their costs have declined dramatically > in recent years from what I understand. I don't imagine that such a trial > would cost more than $500,000. Teva would probably love to help out in the > funding since their drug is involved and any positive data would help save > profits from the inevitable approval of Antegren. I'm not wealthy but I > would even throw $50,000 of my own money just to put this issue to rest. > Don't know for certain that you would reach statistical significance with a > trial this small but you would at least see a clear trend towards efficacy > or not. > When I was diagnosed 2 1\2 years ago, I was only told of the ABC drugs > by my neurologist. Doctors are hesitant to prescribe drugs based soley on > anecdotal evidence alone. Understandably they need trial-based evidence > before they are willing to offer this option to patients. Your website was > the first I visited to learn about my disease and I am grateful; but by > going to other sites I'm only now learning about a therapy that is harmless > and yet may hold the key to a ground-breaking treatment. Since this drug is > off-patent the only likely source of funding would have to come from an > institution such as yours. The mechanism of action is legitimate and the > anecdotal evidence is overwhelming if you listen to those who are using it. > Therefore I believe your organization is failing it's benefactors and it's > mission to find a cure by ignoring this drug which is already on the market. > While spending $388,559 to test " Control of EAE-specific T cells through > modified peptide interaction with MHC " may lead to a cure 15-20 years from > now; why look for a needle in a haystack when you have a good needle already > in your hand? > Will be seeing my neurologist in a few months and plan on getting a > prescription from him or elsewhere. I just think it would be wonderful if > newly-diagnosed MS patients could be offered a treatment upfront that might > save them from years of disease progression. This treatment could be > especially useful for those without insurance who cannot afford > $10,000+/year treatments currently available. Please forward this letter to > those who determine which projects to fund and let me know if I could help > fund it. I think I could even find a trial coordinator for such a project. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 --Marcie I agree with you 100%. What it really comes down to is the almighty dollar, not to actually help people with MS! Steve - In low dose naltrexone , marciemjm@a... wrote: > On occassion, I have attempted to make contact with the MS Society in > reference to other issues. Surprise surprise!! I never got a response! I was > attempting to locate funding for vehicle modifications, which by the way, I have > since accomplished without their help! Their goal appears, according to recent > TV ads, to be to raise funding for research to find a cure! Again, surprise > surprise! A cure would mean no need for research and many highly paid > employees would be out of a job!! Ain't ever gonna happen!! I believe that is how it > works. I'm not angry, I've just accepted that that is how it is, and I have > to be in charge of MY health! > > Marcie > > > \ > In a message dated 4/1/2004 8:59:05 AM Central Standard Time, > evansbenjamin@h... writes: > > > > Subj:[low dose naltrexone] Re: Letter to MS Society > > Date:4/1/2004 8:59:05 AM Central Standard Time > > From: evansbenjamin@h... (bonzolewdicrus) > > Reply-to: <A HREF= " mailto:low dose naltrexone " >low dose naltrexone@yaho ogroups.com</A> > > low dose naltrexone > > > > > > > > > > Hi Larry, yes I've signed the petition and will get friends to do so > > as well. Hopefully that will pick up momentum. I'm afraid it might > > take a government years to execute on that though. > > Personally I feel the MS Society should have studied this matter > > long ago. If they are accepting donations from people under the > > pretense of finding an expedient cure then they have failed us by not > > having studied it. I've given money to this organization as I'm sure > > many of you have as well. If I sounded angry in that letter - I am! > > It upsets me that they have yet to act on this if it works as well as > > all of you have reported. Hopefully I'll get a respectable reply to > > my letter after I send it; if I don't then I'll have to question the > > organization's tru motives. - Ben > > > > > Great letter. Have you seen and signed our worldwide petition? > > http://www.thepetitionsite.com/takeaction/110785607 > > > > > > I even created shortcut link to it for easier dissemination: > > http://www.larrygc.com/ldnpetition (takes you to the same place) > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Looks and sounds great Ben. I've contacted NMSS by e-mail about LDN and to no surprise have heard nothing back. However, if they continue to receive letters like this, they have no choice but to start paying attention! Thanks for your efforts. (MS) -----Original Message----- From: [mailto:evansbenjamin@...] Sent: Thursday, April 01, 2004 7:15 AM low dose naltrexone Subject: [low dose naltrexone] Letter to MS Society Hi everyone, I'm new to this board and still learning about low-dose naltrexone which I stumbled across a few weeks ago. Everyone here seems to be thrilled by this therapy and so I plan on getting a prescription from my neuro in a few months. The lack of any trial-based evidence compelled me to write a letter to the National MS Society to start a trial. I've composed a rough-draft below. Let me know if there's anything I should add before sending; or if anybody has already tried this approach and if so what response you got. Thanks, Ben Letter to National MS Society Have searched your site and am bewildered that I cannot find even a single mention about low-dose naltrexone treatment despite its current use by thousands of MS patients. Certainly I understand your organization cannot appear to endorse a treatment that has not been studied. However I am amazed that your organization isn't supporting any research into whether or not it is effective. So many are using it without trial results anyway - and reporting miraculous results! If indeed it does work then tens of thousands of patients are missing out on this incredibly safe and cheap therapy. From my estimate, the cost of a trial would be relatively cheap. According to Dr. Bihari's website " low dose naltrexone.org " , Copaxone can be used with this therapy. So you could design a trial of about 25 Copaxone/placebo patients in one arm and 25 Copaxone/Naltrexone 4.5mg patients in the other arm. To determine effectiveness, you would only need about three MRIs per patient (one at baseline, one at year one, last at year 2). MRIs are expensive I'm sure but their costs have declined dramatically in recent years from what I understand. I don't imagine that such a trial would cost more than $500,000. Teva would probably love to help out in the funding since their drug is involved and any positive data would help save profits from the inevitable approval of Antegren. I'm not wealthy but I would even throw $50,000 of my own money just to put this issue to rest. Don't know for certain that you would reach statistical significance with a trial this small but you would at least see a clear trend towards efficacy or not. When I was diagnosed 2 1\2 years ago, I was only told of the ABC drugs by my neurologist. Doctors are hesitant to prescribe drugs based soley on anecdotal evidence alone. Understandably they need trial-based evidence before they are willing to offer this option to patients. Your website was the first I visited to learn about my disease and I am grateful; but by going to other sites I'm only now learning about a therapy that is harmless and yet may hold the key to a ground-breaking treatment. Since this drug is off-patent the only likely source of funding would have to come from an institution such as yours. The mechanism of action is legitimate and the anecdotal evidence is overwhelming if you listen to those who are using it. Therefore I believe your organization is failing it's benefactors and it's mission to find a cure by ignoring this drug which is already on the market. While spending $388,559 to test " Control of EAE-specific T cells through modified peptide interaction with MHC " may lead to a cure 15-20 years from now; why look for a needle in a haystack when you have a good needle already in your hand? Will be seeing my neurologist in a few months and plan on getting a prescription from him or elsewhere. I just think it would be wonderful if newly-diagnosed MS patients could be offered a treatment upfront that might save them from years of disease progression. This treatment could be especially useful for those without insurance who cannot afford $10,000+/year treatments currently available. Please forward this letter to those who determine which projects to fund and let me know if I could help fund it. I think I could even find a trial coordinator for such a project. _________________________________________________________________ Free up your inbox with MSN Hotmail Extra Storage. Multiple plans available. http://join.msn.com/?pgmarket=en-us & page=hotmail/es2 & ST=1/go/onm00200362 ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 Ben, I wrote to the NMSS a couple of months ago and they responded that they were not interested because there was no scientific evidence that it works. Apparently the word of the people they are supposed to represent has no merit. > Hi everyone, I'm new to this board and still learning about low-dose > naltrexone which I stumbled across a few weeks ago. Everyone here seems to > be thrilled by this therapy and so I plan on getting a prescription from my > neuro in a few months. The lack of any trial-based evidence compelled me to > write a letter to the National MS Society to start a trial. I've composed a > rough-draft below. Let me know if there's anything I should add before > sending; or if anybody has already tried this approach and if so what > response you got. > > Thanks, Ben > > Letter to National MS Society > > Have searched your site and am bewildered that I cannot find even a single > mention about low-dose naltrexone treatment despite its current use by > thousands of MS patients. Certainly I understand your organization cannot > appear to endorse a treatment that has not been studied. However I am > amazed that your organization isn’t supporting any research into whether or > not it is effective. So many are using it without trial results anyway - > and reporting miraculous results! If indeed it does work then tens of > thousands of patients are missing out on this incredibly safe and cheap > therapy. > From my estimate, the cost of a trial would be relatively cheap. > According to Dr. Bihari’s website “low dose naltrexone.org”, Copaxone can be > used with this therapy. So you could design a trial of about 25 > Copaxone/placebo patients in one arm and 25 Copaxone/Naltrexone 4.5mg > patients in the other arm. To determine effectiveness, you would only need > about three MRIs per patient (one at baseline, one at year one, last at year > 2). MRIs are expensive I’m sure but their costs have declined dramatically > in recent years from what I understand. I don’t imagine that such a trial > would cost more than $500,000. Teva would probably love to help out in the > funding since their drug is involved and any positive data would help save > profits from the inevitable approval of Antegren. I’m not wealthy but I > would even throw $50,000 of my own money just to put this issue to rest. > Don’t know for certain that you would reach statistical significance with a > trial this small but you would at least see a clear trend towards efficacy > or not. > When I was diagnosed 2 1\2 years ago, I was only told of the ABC drugs > by my neurologist. Doctors are hesitant to prescribe drugs based soley on > anecdotal evidence alone. Understandably they need trial-based evidence > before they are willing to offer this option to patients. Your website was > the first I visited to learn about my disease and I am grateful; but by > going to other sites I’m only now learning about a therapy that is harmless > and yet may hold the key to a ground-breaking treatment. Since this drug is > off-patent the only likely source of funding would have to come from an > institution such as yours. The mechanism of action is legitimate and the > anecdotal evidence is overwhelming if you listen to those who are using it. > Therefore I believe your organization is failing it’s benefactors and it’s > mission to find a cure by ignoring this drug which is already on the market. > While spending $388,559 to test “Control of EAE-specific T cells through > modified peptide interaction with MHC” may lead to a cure 15-20 years from > now; why look for a needle in a haystack when you have a good needle already > in your hand? > Will be seeing my neurologist in a few months and plan on getting a > prescription from him or elsewhere. I just think it would be wonderful if > newly-diagnosed MS patients could be offered a treatment upfront that might > save them from years of disease progression. This treatment could be > especially useful for those without insurance who cannot afford > $10,000+/year treatments currently available. Please forward this letter to > those who determine which projects to fund and let me know if I could help > fund it. I think I could even find a trial coordinator for such a project. > > _________________________________________________________________ > Free up your inbox with MSN Hotmail Extra Storage. Multiple plans available. > http://join.msn.com/?pgmarket=en-us & page=hotmail/es2 & ST=1/go/onm00200362ave/dire > ct/01/ > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 How come we have so many catch 22's? Are they saying they won't trial it because there's been no trials? Seems like having any donation-accepting or profit-making organization check out LDN is like someone looking for their first job. You can't get hired if you don't have prior experience, and you can't get prior experience if nobody's gonna hire you. We can't research LDN, there's been no research. When I first started LDN, less than a year ago, and started talking about it other places, I was pretty much felt like people thought I was lying, or trying to sell something, or was simply just living an illusion. But if I were to say TODAY that Yeah, I'm lying, it's done nothing for me, or that maybe I HAVE been just living an illusion... well, there's enough of YOU out there NOW who would KNOW the truth. Everyone talks about LDN 'being just like all the other scams' out there, but can't they see that LDN is an exception? Could very well be one of the very very few exceptions. I just wrote this elsewhere yesterday, and it was no April Fools joke: All I can say is... trials or not... when people do things, if it is BAD, you hear lots about it. You seem to hear every bad thing about every single med or method out there. People Complain All The Time. There are plenty of alternatives out there people try, but how much Buzzing do you hear about Bee Venom Therapy? How much gurgling about any one specific diet? Or most anything else. But what seems to stand out, and spreading around the world, is talk about LDN. I may have had great results, but one person's results don't get repeated over and over again, all over the world. You hear similar complaints about other meds from many people, and you hear similar comments about LDN from many people.The only complaints that stand out about LDN are that it's not approved, it's not trialed, or someone can't find a doc to prescribe it.Not a bad rumbling so far. ----- Original Message ----- From: low dose naltrexone Sent: Thursday, April 01, 2004 09:57 Subject: [low dose naltrexone] Re: Letter to MS Society Hi Larry, yes I've signed the petition and will get friends to do so as well. Hopefully that will pick up momentum. I'm afraid it might take a government years to execute on that though. Personally I feel the MS Society should have studied this matter long ago. If they are accepting donations from people under the pretense of finding an expedient cure then they have failed us by not having studied it. I've given money to this organization as I'm sure many of you have as well. If I sounded angry in that letter - I am! It upsets me that they have yet to act on this if it works as well as all of you have reported. Hopefully I'll get a respectable reply to my letter after I send it; if I don't then I'll have to question the organization's tru motives. - Ben Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 <I wrote to the NMSS a couple of months ago and they responded that they were not interested because there was no scientific evidence that it works.> If they dont test it, how will they get the scientific evidence, duh ! > Ben, > I wrote to the NMSS a couple of months ago and they responded that they were not interested because there was no scientific evidence that it works. Apparently the word of the people they are supposed to represent has no merit. > > Hi everyone, I'm new to this board and still learning about low- dose > > naltrexone which I stumbled across a few weeks ago. Everyone here seems to > > be thrilled by this therapy and so I plan on getting a prescription from my > > neuro in a few months. The lack of any trial-based evidence compelled me to > > write a letter to the National MS Society to start a trial. I've composed a > > rough-draft below. Let me know if there's anything I should add before > > sending; or if anybody has already tried this approach and if so what > > response you got. > > > > Thanks, Ben > > > > Letter to National MS Society > > > > Have searched your site and am bewildered that I cannot find even a single > > mention about low-dose naltrexone treatment despite its current use by > > thousands of MS patients. Certainly I understand your organization cannot > > appear to endorse a treatment that has not been studied. However I am > > amazed that your organization isn't supporting any research into whether or > > > not it is effective. So many are using it without trial results anyway - > > and reporting miraculous results! If indeed it does work then tens of > > thousands of patients are missing out on this incredibly safe and cheap > > therapy. > > From my estimate, the cost of a trial would be relatively cheap. > > According to Dr. Bihari's website " low dose naltrexone.org " , Copaxone can be > > used with this therapy. So you could design a trial of about 25 > > Copaxone/placebo patients in one arm and 25 Copaxone/Naltrexone 4.5mg > > patients in the other arm. To determine effectiveness, you would only need > > about three MRIs per patient (one at baseline, one at year one, last at year > > 2). MRIs are expensive I'm sure but their costs have declined dramatically > > in recent years from what I understand. I don't imagine that such a trial > > would cost more than $500,000. Teva would probably love to help out in the > > funding since their drug is involved and any positive data would help save > > > profits from the inevitable approval of Antegren. I'm not wealthy but I > > would even throw $50,000 of my own money just to put this issue to rest. > > Don't know for certain that you would reach statistical significance with a > > trial this small but you would at least see a clear trend towards efficacy > > or not. > > When I was diagnosed 2 1\2 years ago, I was only told of the ABC drugs > > by my neurologist. Doctors are hesitant to prescribe drugs based soley on > > anecdotal evidence alone. Understandably they need trial-based evidence > > before they are willing to offer this option to patients. Your website was > > the first I visited to learn about my disease and I am grateful; but by > > going to other sites I'm only now learning about a therapy that is harmless > > and yet may hold the key to a ground-breaking treatment. Since this drug is > > off-patent the only likely source of funding would have to come from an > > institution such as yours. The mechanism of action is legitimate and the > > > anecdotal evidence is overwhelming if you listen to those who are using it. > > Therefore I believe your organization is failing it's benefactors and it's > > mission to find a cure by ignoring this drug which is already on the market. > > While spending $388,559 to test " Control of EAE-specific T cells through > > modified peptide interaction with MHC " may lead to a cure 15-20 years from > > now; why look for a needle in a haystack when you have a good needle already > > in your hand? > > Will be seeing my neurologist in a few months and plan on getting a > > prescription from him or elsewhere. I just think it would be wonderful if > > newly-diagnosed MS patients could be offered a treatment upfront that might > > save them from years of disease progression. This treatment could be > > especially useful for those without insurance who cannot afford > > $10,000+/year treatments currently available. Please forward this letter to > > those who determine which projects to fund and let me know if I could help > > > fund it. I think I could even find a trial coordinator for such a project. > > > > _________________________________________________________________ > > Free up your inbox with MSN Hotmail Extra Storage. Multiple plans available. > > http://join.msn.com/?pgmarket=en- us & page=hotmail/es2 & ST=1/go/onm00200362ave/dire > > ct/01/ > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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