Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 Hi Sammy joe ,]its great news about the trial! But I like T would have serious reservations about asking anyone with serious long term( more than 7-10 years ppms or spms ms diagnosed) to go totally treatmentless for 20 months , as part of the placebo group ,which they wouldn’t know of course being double blind trial. It not easy.! How would they ethically get around this ?? Louise OZ PS how long have you had MS? Ive found too many differences in MS peoples labels rr,spms ,ppms too make me think its really dependant on what the neuro perceives that day!. My mother was told for many years that she had the”benign sort” and so was I. This was the cruellest joke of all especially given the condition shes in today! Roll on proteomic research!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 Ditto ! I would shudder to think that I might be on a placebo for 20 months allowing my type of progression to continue. My opinion, LDN appears to have a much higher success rate for slowing/stopping progression than any of the CRABs. I fully understand the need for the study, but in my case, there isn't enough time. If I hadn't started LDN last November, I can only imagine how much worse I may have been at the rate I was going downhill. Maybe the study will be done and can help anyone diagnosed after that time. Marcie (PPMS) In a message dated 8/28/2004 11:00:47 AM Central Standard Time, jatrac1@... writes: I do not agree that our concerns are unfounded. We have a medication that does help. We do not have proof in the form of double blind placebo studies that LDN slows or stops the progression, but too many of us have found relief from bladder issues, depression, etc to say that LDN is of unknown value. And the statistics drawn together so far indicate that LDN is as effective in reducing flare ups as the CRABS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 Your concerns are unfounded. As far as the neurologists are concerned, it is not known that LDN works (that is why the trial is being done). Therefore, there should be no ethical concerns. Infact, their concerns are quite the opposite, will LDN do harm. Can your neuro be absolutely sure that LDN does not interfere with avonex for example. What if patients sue them for carrying out experiments without scientific basis ?. This is the reason that it is taking so long to get the study approved. Furthermore, the trial is well designed in that, they will switch between placebo and drug as another form of control. It would only be unethical to continue with the trial, if at the 20 month or other time point, they find that the LDN group has benefitted, whereas the placebos have not. A <But I like T would have serious reservations about asking anyone with serious long term( more than 7-10 years ppms or spms ms diagnosed) to go totally treatmentless for 20 months , as part of the placebo group ,which they wouldn't know of course being double blind trial.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 I do not agree that our concerns are unfounded. We have a medication that does help. We do not have proof in the form of double blind placebo studies that LDN slows or stops the progression, but too many of us have found relief from bladder issues, depression, etc to say that LDN is of unknown value. And the statistics drawn together so far indicate that LDN is as effective in reducing flare ups as the CRABS. As far as the neurologists' concerns, I believe we have demonstrated repeatedly that there is a huge financial and political issue involved that touches many of them. The safety of Naltrexone is well established, and has been so for many years. That is the reason so many of our GPs will prescribe it after checking it out - even if they doubt that it will do any good they universally agree it will do no harm, once they have been persuaded to check it out. So I still feel concerns for the ethics of a double blind placebo study. And recognize the need for a formal study but have no suggestion as to what form that should take. JT ----- Original Message ----- From: aegis_on_ms low dose naltrexone Sent: Saturday, August 28, 2004 7:02 AM Subject: [low dose naltrexone] Re: re Sammy joes update Your concerns are unfounded. As far as the neurologists are concerned, it is not known that LDN works (that is why the trial is being done). Therefore, there should be no ethical concerns. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 < We do not have proof in the form of double blind placebo studies that LDN slows or stops the progression, but too many of us have found relief from bladder issues, depression, etc to say that LDN is of unknown value > Unfortunately, the medical profession does not consider evidence from the boards as proof that a drug works. Were this to happen, we would all be stinging our blue skins while eating fad diets. A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 However, aspirin was used for things other than pain relief prior to complete testing for those other uses. Anecdotal evidence has value, but "buyer beware" should be standard procedure. ----- Original Message ----- From: aegis_on_ms low dose naltrexone Sent: Saturday, August 28, 2004 11:45 AM Subject: [low dose naltrexone] Re: re Sammy joes update < We do not have proof in the form of double blind placebo studies that LDN slows or stops the progression, but too many of us have found relief from bladder issues, depression, etc to say that LDN is of unknown value >Unfortunately, the medical profession does not consider evidence from the boards as proof that a drug works. Were this to happen, we would all be stinging our blue skins while eating fad diets.A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 Unfortunately your right aegis. -----Original Message----- From: aegis_on_ms [mailto:aegis_on_ms@...] Sent: Saturday, August 28, 2004 2:46 PM low dose naltrexone Subject: [low dose naltrexone] Re: re Sammy joes update < We do not have proof in the form of double blind placebo studies that LDN slows or stops the progression, but too many of us have found relief from bladder issues, depression, etc to say that LDN is of unknown value > Unfortunately, the medical profession does not consider evidence from the boards as proof that a drug works. Were this to happen, we would all be stinging our blue skins while eating fad diets. A Quote Link to comment Share on other sites More sharing options...
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