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Post by Guest on Aug 13, 2005 17:18:57 GMT -5
Kerry why do you pin the rules and then say something like "mistrust since NPA got involved?" What do you mean by saying this?
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Post by Administration on Aug 13, 2005 18:34:17 GMT -5
"Kerry why do you pin the rules and then say something like "mistrust since NPA got involved?" What do you mean by saying this?"
Because from what I saw when I was still at Nuspa posting and reading.. it seemed to me that as soon as the NPA paper was posted.. all hell broke loose. I wasnt around a long time ago, but people started making posts about how in the past the NPA had done something either bad.. or didnt follow thru with what they promised.. something to that affect. That they werent to be trusted and the fact that now they were coming out with a paper caused mistrust among people. Whatever originally happened with the NPA, when I first came to Nuspa they were talked about as being bad news..by all the old time members.. I really have no idea what the story was and never asked. But others read this Im sure as well. Then one day all of a sudden they are the good guys.. and I think thats what is leading people to come up with these conspiracy notions in the first place. I have no opinion whatsoever about the NPA.. I really only know what Ive read on Nuspa. I think its great that they even took the time to look into this matter. My comment wasnt meant to diss the NPA.. I moreso am concerned about the conspiracy issues people are having and wonder if this is a reason why.. It seems like it started after all that? Sorry if I offended and I hope I cleared this up. Any help any of us get with this issue is very much appreciated by all.
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Post by Observer on Aug 13, 2005 19:06:58 GMT -5
Kerri shouldn't have had to repost the rules to start with. They have been mentioned over and over by other adminstraters and have been on the main page since the beginning.
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Post by Betsy on Aug 13, 2005 22:47:07 GMT -5
Response to an inappropriate comment you received:
Perhaps some rude visitor was playing around. I know this has happened on the safe2use.com website. Intruders have posted obsenities and crude sexual comments. They are sick. Sometimes they have attributed their comments to a regular and known person posting. The webmistress does not get these things off quickly enough. Perhaps this is what actually happened in the case where you received and inappropriate comment. Betsy
P.S. There are one or two Morgellon suffers on that site. too. I first started with that site when I was treated for scabies. I certainly like the way the postings are set up. One can easily scroll down and see at a glance what has been going on. I haven't found another site that is set up in this manner. Perhaps it's worth taking a look. One can even go back and check for older postings.
I agree with you that there might be some bioengineering with this disease. If that's the case, obviously no one wants to claim responsibility or call attention to themselves. However, at this point, we need some researchers to work with sufferers, their symptoms, their environment. The environment in my case has a zillion cllues to study if one had the expertise. Perhaps an emerging microbiology student could become interested in doing his thesis on this disease. Better yett, perhaps a professor could attract a group of students to study the disease forming independent concllusions (working in teams).
One great probllem with this last idea is the distance that separates the sufferers from one another. Iindeed, the only way we can even communicate with each other is through these postings. Frankly, I would like to see a roster mailed out to each sufferer listing names, city and state, phone number and e-mail. This information could be an optional choice for each person. Being in touch with others would help strengthen networking and sharing of information. However, it might detract from the overall benefit of posting information. At the very least, perhaps we could have a phone contact number where individuals who wanted to exchange phone numbers or e-mail addresses could safely do this without risking putting this personal information on the internet.
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Post by researcher on Aug 14, 2005 0:25:05 GMT -5
There are wonderful people on the Nuspa, " BUT" when I stated the truth about this stuff, they weren't looking for the worms at the time and how bad this was she deleted it. When I spoke of a bio germ , it was deleted. people who saw doctors disappeared and never returned at first. Then there was a person on there who started fights with everyone she didn't like so they would get deleted. Post got shoved down to the bottom super fast if they did not like what you said. I am as sick as all, my only interest is helping people survive this stuff. None of my post had anything wrong with them. I also got spammed every time I went there. Asked her about it and it was deleted, as someone said that's not all going on there. I was really hurt and fed up with trying to post there. Alot left for that same reason. Some were told to not say certain things there. It became a product pushing site for awhile. If something won't kill this stuff, I'll tell people. Why have these poor sick people wasting money on it ,if it won't work! Let's say if you got real honest with this, they get scared and then ignored you. I am trying to save lives. This stuff can kill you. I tried it all there. It's run over by some who get to do what ever they want and the rest of us got deleted. I just read it for hope and not feeling so alone. So I don't know what's up. But I think it's very cruel to do that to people who did nothing at all.
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Post by ebgbgms on Aug 14, 2005 0:56:44 GMT -5
Let's focus on our board, I understand, but it is taking away from newcomers and other's who have allot on thier plate. Let's focus on each other. ((((((((hugs))))))))))))
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truth
New Member
Posts: 3
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Post by truth on Aug 14, 2005 19:18:39 GMT -5
Plus do what I did, I printed out all my deleted post and gave them to my lawyer. Just so no one could call me a lier. The post had nothing wrong with them.
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Post by Guest on Aug 14, 2005 19:33:09 GMT -5
From what I've read and heard about NUSPA, I think Lois is the one that ought to get a lawyer. I don't know who you people are but it sounds like more than just rivalry. It sounds like you're deliberately trying to keep us from getting the research we need. Why? Who are you, are you with the government or something?
You've got all our names and phone numbers and addresses, Lois has never asked for any personal information. I'm really starting to get concerned. What if you do to me what you've done to Lois, how many others have been victimized in this way? This is one scary group, I'm outta here.
NUSPA bring the board back, please.
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Post by Administration on Aug 15, 2005 11:50:46 GMT -5
Guest, I have no idea who you are talking about or who has everyones names and phone numbers but I have had it with the Nuspa bashing already. The only involvement Ive had with the Government is meetings with my State Senator to discuss what should be done about the Lyme mess in my own State. I have talked to Lois about this problem.. even asked her if she wanted me to remove the word Nuspa from our message boards memory because every so often, someone starts again.. She said to me "Kerry, you can't please everyone all of the time so don't worry about it". But obviously this is a problem and will continue.. so now the word Nuspa and Lois will be gone. You have a problem with Nuspa? Write to Lois... I am sick of the personal attacks. This message board is for helping people and sharing research.. support for others etc... If you feel the need to bash Nuspa.. create your own message board to do it.
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Post by threadbearer on Aug 15, 2005 12:48:20 GMT -5
I had a similar experience with ///////. I finally decided to not visit there again. It was, however, useful in finding others that had the same experiences. I am not sure if this board would google as easily, or if I would've found this community without ///////, so for that I am thankful.
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