Guest guest Posted May 28, 2004 Report Share Posted May 28, 2004 Aegis thinks Mr.Dervin is too hasty to make an exit. Just to let you know Aegis is working behind the scenes, for that is what Aegis does best. There have been no takers for a united EWC group. This is probably good because we are so diverse in our opinions as to what should be done and how it should be done. Aegis has a daily ethical dilemma, to correct or not to correct someone who is on a futile journey to nowhere. To cite todays examples, somebody would prefer to focus their energy on getting LDN approved for MS without a trial, another well meaning soul wrote to Pubmed (now Pubmed only catalogues papers that have been published, they have nothing to do with suggesting or implementing a trial) and on and on..wasted energies. There are a few people on this board and in the U.K. who are working hard and in the right direction. So join up with those people and make a difference. > >Aegis thinks, not a good idea to LOL. This person has been paid to > >bash LDN. I have said this is a disinformation war between the LDN > >community and those who stand to loose the big $$. The public > >relations war will get worse, much worse. You can be sure that this > >is only the first salvo. > > > >No takers yet to be the EWC leader ?. > > > > > > > >--- In low dose naltrexone , " Joyce F. " <joyce445@h...> > >wrote: > > > Are any of you visitors of the www.spotlighthealth.com site? I have > >been > > > posting to their forum off and on regarding LDN for some time now. > >My name > > > there is Paige1. If any of you can please go by there and into > >multiple > > > sclerosis and then the support groups. Go to Montel's corner and > >the thread > > > titled " LDN update " . A person by the name of Krimples is posting > >messages > > > about how LDN causes tumors. Evidentaly this person had a bad > >reaction to > > > the LDN but it is just infuriating that this person is posting like > >this. > > > Here is some of what he/she is saying there...... > > > > > > " I am trying to forewarn others about this nightmare I have been > >through. To > > > suddenly discover you have a rapidly growing tumor that they > >suspect may be > > > cancerous is very frightening! To think I almost died, is even more > > > frigthening. Now I am stuck with an abdominal adhesion for the rest > >of my > > > life from this event. Damn right I am angry! I plan to turn the > >person in > > > that prescribed the LDN over-the-phone. He would have given it to > >anyone! > > > > > > I also intend to go to the local pharmacy here and see if they are > >still > > > pushing procarin. If they are, I intend to turn them in as well (I > >checked > > > out quackwatch.com and they tell the prokarin story as ka has > >described > > > above). Quackwatch.com also told me to turn in the " doctor " that > >prescribed > > > the LDN, and that was before I told them about the tumor. > > > > > > People with MS get caught in fraudulent hoaxes all of the time. The > >reason > > > for this is because we are all so desperate for something to stop > >the > > > progression of this disease. > > > > > > That is because we have a " condition " as a good friend of mine with > >MS calls > > > it. The cause is unknown as is any cure. We have a very long way to > >go until > > > we see one. " > > > > > > I'm just afraid that people will be scared off by this > >person...Harry, you > > > would have a great answer for him/her I'm sure. JoyceF > > > > > > _________________________________________________________________ > > > Get 200+ ad-free, high-fidelity stations and LIVE Major League > >Baseball > > > Gameday Audio! <http://radio.msn.click->http://radio.msn.click- > >url.com/go/onm00200491ave/direct/01/ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2004 Report Share Posted May 28, 2004 And did you step up the head the EWC? We all have our obligations and responsibilities. I think most of us do the best we can to help each other. For some of us energy is limited; others have limited time. Recently I haven't had time or energy for anything but a few responses to the messages posted here. And remember, the primary intent here is to help each other with the questions and experiences we have regarding LDN. Seeking acceptance for it grows out of our concern for those who are denied the opportunity to even give it a try. If you believe this group is not acting effectively on their desire to gain acceptance for LDN perhaps you should step up and offer to lead the way. ----- Original Message ----- From: Dervin low dose naltrexone Sent: Friday, May 28, 2004 8:47 AM Subject: [low dose naltrexone] Signing off. To Aegis, Bestaunt and those who have helped me with personal questions....THANK YOU so much. You have really made a difference. I will miss you.However, after seeing so many messages by those lamenting that the LDN story isn't getting out, that no one is listening, and that they are finding it difficult to convince their doctors to give them a prescription, I find is very difficult to justify continuing to read all these posts when so little interest has been shown in taking the time to DO something about it.I posted a suggestion that we use one of our strengths...the number of us with MS who use and want LDN, to get it into the public eye via a concentrated blitz on media outlets. Aegis took this even further and posted comments suggesting where to begin, what priorities and the possible creation of the EWC. BUT there has been NO further interest shown, NO one wanting to make the effort and the only thing we see is the usual blather of 'feel good' posts.It is apparent that this is a group of people who would rather chat, complain, talk about anything but not put their effort into moving forward. I know there will be a flurry of posts saying 'good riddance' and condemning this message, but I have a limited time to find a way to halt or slow down this damn disease progression, and perhaps help others who want to maintain a quality of life, and therefore will look for groups who really want to take action, not just complain.bye. At 03:33 PM 5/27/2004, you wrote: Aegis thinks, not a good idea to LOL. This person has been paid to bash LDN. I have said this is a disinformation war between the LDN community and those who stand to loose the big $$. The public relations war will get worse, much worse. You can be sure that this is only the first salvo.No takers yet to be the EWC leader ?.> Are any of you visitors of the www.spotlighthealth.com site? I have been > posting to their forum off and on regarding LDN for some time now. My name > there is Paige1. If any of you can please go by there and into multiple > sclerosis and then the support groups. Go to Montel's corner and the thread > titled "LDN update". A person by the name of Krimples is posting messages > about how LDN causes tumors. Evidentaly this person had a bad reaction to > the LDN but it is just infuriating that this person is posting like this. > Here is some of what he/she is saying there......> > "I am trying to forewarn others about this nightmare I have been through. To > suddenly discover you have a rapidly growing tumor that they suspect may be > cancerous is very frightening! To think I almost died, is even more > frigthening. Now I am stuck with an abdominal adhesion for the rest of my > life from this event. Damn right I am angry! I plan to turn the person in > that prescribed the LDN over-the-phone. He would have given it to anyone!> > I also intend to go to the local pharmacy here and see if they are still > pushing procarin. If they are, I intend to turn them in as well (I checked > out quackwatch.com and they tell the prokarin story as ka has described > above). Quackwatch.com also told me to turn in the "doctor" that prescribed > the LDN, and that was before I told them about the tumor.> > People with MS get caught in fraudulent hoaxes all of the time. The reason > for this is because we are all so desperate for something to stop the > progression of this disease.> > That is because we have a "condition" as a good friend of mine with MS calls > it. The cause is unknown as is any cure. We have a very long way to go until > we see one. "> > I'm just afraid that people will be scared off by this person...Harry, you > would have a great answer for him/her I'm sure. JoyceF> > _________________________________________________________________> Get 200+ ad-free, high-fidelity stations and LIVE Major League Baseball > Gameday Audio! http://radio.msn.click-url.com/go/onm00200491ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
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