Guest guest Posted January 20, 2004 Report Share Posted January 20, 2004 There is no argument. Some are spreading false information. Should we as people with a very serious disease address this or should we just agree to disagree. I'm just pointing out something that has gone overlooked for long enough. The impact of the false statement of interferon being an immunosuppressant may lead some to avoid a treatment that could prolong disability. So, let me address it for the benefit of those that might mistaking think that LDN should never go with beta or rebit. What I am saying needs to be said. Being that people are responding with mindless regurgitation of a website and what some doctor in Whales says, I am being led to be a little more " proactive " in making my point. I say this is a very serious disease and misinformation that is affecting how people pursue treatment is very serious, as well. So let this play out Miss and if you're scared or uncomfortable, close your eyes. --- In low dose naltrexone , " Sue Goose " <suegoose@b...> wrote: > I first became interested in this group approx 8 months ago when there was only a handful of people posting. I don't know whether any ground-rules exist but we kind of agreed amongst ourselves that it was best if we stuck to the subject of LDN and our various experiences with it. As we were all fairly new to the drug there was a lot to be learned in terms of individuals' reactions to it and a lot of vital information was shared. How has this group managed to jump from being so supportive of each other to being so aggressive and attacking people both via the group emails and apparently by personal email? I appreciate that the various conditions that we are all living with can make us all very angry but can we not simply agree to disagree sometimes? I doubt if any of us are experts although I except that some appear to be more knowledgeable than others. LDN is still very much an unknown quantity and whether it gets trialed or not is besides the point - it is currently helping an awful lot of people and even if we don't see improvement we are hearing that progression has been halted. It would be wonderful if it were to be trialed and became readily available to all but I fear that scenario is probably some way into the future and the current discussions about whether the big 'pharmas', universities or research groups will take on the task is pointless unless someone is prepared to actually approach them and ask the question. > > In the meantime can we at least try and get this group back on track and stop the arguments - they are not helping anybody. > > No offence intended to anyone - let's be friends! > > Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 Found this on the National Multiple Sclerosis Society website. " We hope this brochure helps sort out the facts on the five drugs approved to date. Four of them-Rebif, Copaxone, Betaseron, and Avonex-are self-injectable drugs for long-term use; they modulate the immune system. The fifth, Novantrone, is an immune system suppressor. " " Miss " ----- Original Message ----- From: " Dimitrios " <dpoula1@...> <low dose naltrexone > Sent: Tuesday, January 20, 2004 7:27 PM Subject: [low dose naltrexone] koom by yah > There is no argument. Some are spreading false information. Should > we as people with a very serious disease address this or should we > just agree to disagree. > > I'm just pointing out something that has gone overlooked for long > enough. The impact of the false statement of interferon being an > immunosuppressant may lead some to avoid a treatment that could > prolong disability. So, let me address it for the benefit of those > that might mistaking think that LDN should never go with beta or > rebit. > > What I am saying needs to be said. Being that people are responding > with mindless regurgitation of a website and what some doctor in > Whales says, I am being led to be a little more " proactive " in making > my point. > > I say this is a very serious disease and misinformation that is > affecting how people pursue treatment is very serious, as well. So > let this play out Miss and if you're scared or uncomfortable, close > your eyes. > > > > > I first became interested in this group approx 8 months ago when > there was only a handful of people posting. I don't know whether any > ground-rules exist but we kind of agreed amongst ourselves that it > was best if we stuck to the subject of LDN and our various > experiences with it. As we were all fairly new to the drug there was > a lot to be learned in terms of individuals' reactions to it and a > lot of vital information was shared. How has this group managed to > jump from being so supportive of each other to being so aggressive > and attacking people both via the group emails and apparently by > personal email? I appreciate that the various conditions that we are > all living with can make us all very angry but can we not simply > agree to disagree sometimes? I doubt if any of us are experts > although I except that some appear to be more knowledgeable than > others. LDN is still very much an unknown quantity and whether it > gets trialed or not is besides the point - it is currently helping an > awful lot of people and even if we don't see improvement we are > hearing that progression has been halted. It would be wonderful if > it were to be trialed and became readily available to all but I fear > that scenario is probably some way into the future and the current > discussions about whether the big 'pharmas', universities or research > groups will take on the task is pointless unless someone is prepared > to actually approach them and ask the question. > > > > In the meantime can we at least try and get this group back on > track and stop the arguments - they are not helping anybody. > > > > No offence intended to anyone - let's be friends! > > > > Sue > > > > > Quote Link to comment Share on other sites More sharing options...
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