Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 Hi Xgraf, I totally understand what you mean and it often bothers me too. As fas as I know this group was for people of many illnesses to come to , to discuss LDN. What I think is very unfair at this group is that many poeple post MS information regularly which is not related to MS and whatever about us MSer's, this must be so frustrating for others here that for instance have aids, cancer, lupus etc , as this information to the most part will be irrelevant to them. There are over a 1000 people in this group and I know the majority do seem to have MS but I reckon if people with MS want to talk about other issues besides MS they should discuss it through private email or join a group relevant. I'm a memebr of many groups across the net. There are many areas to my MS which I find as important if not more inportant than LDN but I refuse to tlak about them here unless I feel it real necessary to reply to someone to give them infomration. Thsoe who want to discuss diet and MS , there's an excellent group on for that, you just need to go to http://www.ms-diet.org and find the information and those who need inforamtion on exercise etc there's great groups for that too...one of the best places for alternative therapies can be found at http://www.msrc.co.uk Ok I'll stop going on now, but I wanted to make my point as I agree with you Xgraf and think that it's only fair to take everyone into consideration in this group and only tdiscuss LDN here. Rep. Ireland Message: 16 Date: Wed, 7 Jul 2004 19:20:13 +0300 From: "Tomasta" <tomasta.jeppesen@...>Subject: Re: Re: Stem Cell Treatment (OT)Tom, my point was - is this not a forum about LDN, it's use and experiences, or is it a wide ranging conversation about all the possible cures for MS? There are many things relevant to our collective condition, but is this the place to discuss them?I understood this was an area relating to 'low dose naltrexone' as per it's name.I apologise if I have offended you or anyone else, I have found much information, that I have gleaned from the forum, to be extremely valuable and I continue to search for more information.Just sorting the wheat from the chafe is so time consuming, with the result that I am questioning continuing to be part of this forum.Hence, I just wondered if others were feeling this way as well?Humbly,Xgraf http://edwina.sail.to MS Friends Please help by signing the Petition to get Low Dose Naltrexone into Clinical Trials for Multiple Sclerosis http://www.thepetitionsite.com/takeaction/110785607 ALL-NEW Messenger - sooooo many all-new ways to express yourself Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 It is true that the forum is officially designated as a mouthpiece for LDN. While the focus should be on LDN, LDN is not separable from MS. It appears logical to be able to discuss other MS therapies and how they compare with LDN, or even discuss the disease MS itself. The fact is that atleast in the US, this board has become the pre-eminent discussion board for MS. I am not aware of any comparable US board which has so much discussion on MS and LDN. By cutting down on non-LDN MS related topics, one runs the risk of killing the board. Afterall, there is not much new research on LDN coming out on a daily basis. Having said that, the focus should be on LDN, but other MS related topics should not be taboo. The body needs to be treated as a whole!. Personally, as long as one is discussing the applications of LDN or one is discussing MS, it should be o.k. Its only when we get into religious controversies that the topics become inappropriate for this board. FWIW, Y > Hi Xgraf, > > I totally understand what you mean and it often bothers me too. As fas as I know this group was for people of many illnesses to come to , to discuss LDN. What I think is very unfair at this group is that many poeple post MS information regularly which is not related to MS and whatever about us MSer's, this must be so frustrating for others here that for instance have aids, cancer, lupus etc , as this information to the most part will be irrelevant to them. > There are over a 1000 people in this group and I know the majority do seem to have MS but I reckon if people with MS want to talk about other issues besides MS they should discuss it through private email or join a group relevant. I'm a memebr of many groups across the net. There are many areas to my MS which I find as important if not more inportant than LDN but I refuse to tlak about them here unless I feel it real necessary to reply to someone to give them infomration. Thsoe who want to discuss diet and MS , there's an excellent group on for that, you just need to go to http://www.ms-diet.org and find the information and those who need inforamtion on exercise etc there's great groups for that too...one of the best places for alternative therapies can be found at http://www.msrc.co.uk > Ok I'll stop going on now, but I wanted to make my point as I agree with you Xgraf and think that it's only fair to take everyone into consideration in this group and only tdiscuss LDN here. > > Rep. Ireland > > Message: 16 > Date: Wed, 7 Jul 2004 19:20:13 +0300 > From: " Tomasta " <tomasta.jeppesen@p...> > Subject: Re: Re: Stem Cell Treatment (OT) > > Tom, > > my point was - is this not a forum about LDN, it's use and experiences, or is it a wide ranging > conversation about all the possible cures for MS? > > There are many things relevant to our collective condition, but is this the place to discuss > them?I understood this was an area relating to 'low dose naltrexone' as per it's name. > > I apologise if I have offended you or anyone else, I have found much information, that I have > gleaned from the forum, to be extremely valuable and I continue to search for more information. > > Just sorting the wheat from the chafe is so time consuming, with the result that I am questioning > continuing to be part of this forum. > > Hence, I just wondered if others were feeling this way as well? > > Humbly, > > Xgraf > > > > > http://edwina.sail.to > MS Friends > > > Please help by signing the Petition to get Low Dose Naltrexone into Clinical Trials for Multiple Sclerosis > http://www.thepetitionsite.com/takeaction/110785607 > > > > > > > > > > > > --------------------------------- > ALL-NEW Messenger - sooooo many all-new ways to express yourself Quote Link to comment Share on other sites More sharing options...
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