With the help of ANTHILL, our administrator, I am starting this thread to get an idea of how many of us live close to each other. Given this information, we hopefully would be able to share ideas in task groups and organize a more aggressive approach to getting this disease recognized, as well as putting more pressure on the CDC.
I think we have been put off long enough from the CDC and sense that they once again, will not produce any study results as promised for 2011. I don't know about anyone else, but I have had enough of broken promises!!!
Any thoughts welcome--are you well enough to participate and / or for or against this idea?
Last Edit: Nov 22, 2010 11:20:27 GMT -5 by ANTHILL
A fact is a simple statement that everyone believes. It is innocent, unless found guilty. A hypothesis is a novel suggestion that no one wants to believe. It is guilty, until found effective. Edward Teller
For those who shy away from disclosing any info--if you are unable to and/or are against revealing your location, it is certainly your decision and there will be no judgment held against you; but for the purposes of this thread--the ultimate goal being to gain a momentum for recognition of this disease by gathering in organized groups in localized regions-- I think it would be helpful if you wouldn't mind, to could please indicate the reason why you do not want to participate. This could give a greater understanding as to why we can't seem to get cohesiveness especially if we can't indicate the mounting numbers of people afflicted. Like I said, think we need high numbers of people coming together to have any impact and bring this topic to the forefront in the news. Don't think anyone will pay attention to 10-12 people. So if you feel inclined, please pass this link on to others you know who have this disease so that they too, can participate if they wish to do so.
Anyway, have an idea to throw out there for getting more recognition and have also posted this in the CDC thread. Think maybe we could shoot for having a quarterly pile of letters coming into the CDC or President Obama...like one month maybe it could be all of pictures of lesions or unsightly skin problems, titled, Would you want your children to get this?...maybe another month would be what it has done to us personally...or siting articles written about AIDS too, and how this was ignored which allowed it to quickly spread across the world www.highbeam.com/doc/1P2-1351828.html. Each quarter something different and then see if we could get a reporter interested that would be willing to stick their neck out and follow this movement.
I don't know if we could pull this kind of organization off though, if we don't have groups to discuss and report back to other groups. If anyone has another idea, I would welcome your comments. I know this is a huge task to take on and it is easy to get discouraged with what we are up against, but think we have to fight this feeling of being defeated. We have to start somewhere...right? Then hopefully more discussion will evolve into something productive.
Yeah, just thought the same thing and emailing a friend about this this AM--thought maybe we could get all the moderators together from the main Morgellons sites to get in on this too??? Otherwise, had planned on posting it there at Morgellons Disease Research, Marc's site, Morgellons Focus Group etc too as well as contacting some other people for help. Trisha S. has been advocating on our behalf for a while but she is only one person fighting for our cause and think because she didn't have anyone supporting her [?admittedly don't really know all the back end details about this] but do know that she had many doors shut in her face...again, think numbers are our strength. So maybe she might have a lot more contacts too.
Hi, I am from Olympia, WA between Portland and Seattle. I agree that something needs to be done. The CDC has a long history of undermining groups of people (particularly women) who have chronic illnesses. For details look at oslersweb.com
Imho we have allowed the games of the CDC to make us feel dispirited and complacent. As long as we fail to take organized action to bring our cause to the forefront we will never get the support needed for recognition, research, treatment or a cure.
It is frightening for me to have all my personal information made public.
Fact is that I just changed my name from ChicagoBonnie to Zabrubon because if i google my nickname, ChicagoBonnie, the Lymebuster shows up for all of humanity to read. All my stories and personal comments are made public. Not a good thing. I say if you don't want the world to know your state of origin, don't post it here.
Moderator, how do i delete all my personal comments or keep them away from public? I tried to modify my account but my personal comments still show up to the public.
Thanks Jeany and for all who have replied! I am especially thankful for your comment Zabrubon, since I know this is probably a concern for many and think we need to get some of this out on the table.
As far as what you found when doing a search, I know it is not just at Lymebusters where this happens but just about everywhere you post a comment on forums --seems to be random selection--but think ANTHILL will know more about this; hopefully, you can find some resolution to deleting some of the posts you don't want shared.
I know the feeling because this has happened to me from a post on Curezone. But even though it was disturbing, I felt that at least no one really knew who I was --I am assuming because your real name is already disguised, that any information could not be tracked back to you personally, but only to your fictional name [exceptions are obviously the moderator and perhaps by some to whom you were posting to] . But here again, it would be helpful to get ANTHILL'S comment on this because I am sure many share the same concern. Thanks and good for discussion.
prson who agrees w poi.k,hjmv:: LOL @ poi.k,hjmv. . . so far same here. but hopefully not for TOO long
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