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Post by southcity on Aug 12, 2005 2:13:35 GMT -5
A Little story about NUSPA..... Ok Ill try to keep this as short and to the point as possible. There are MANY things going on with this illness than meets the eye. I have many stories but this one troubles me the most.. aprox. 7 months ago I did a little digging on skinparasites.com (NUSPA) and learned that almost all neighboring post office boxes of theirs were all state and federal agencies. So I posted a letter asking the folks at nuspa why I felt they knew much more about this than they are saying. I had read an old usenet thread that said the people at nuspa were all on the merck payroll. they answer (clue) that they are innocent and it is all in my head. this kept me at bay for around a month. THEN i got another wild hair, cant remember exactly what set me off, and I sent them another post asking where they recieved their funding. My post was not posted and I sent them another one asking why it was not posted again no reply and no post to their page.. I was very perturbed at this point and sent them one more expressing my lack of confidence in their goals and mission concerning this disease... My letter said "I believe that NUSPA is simply a tool for some research group to track and MONITOR the spread of this monster, and by the way where doo you get your funding." this post made it to the board as I monitored it there was 1 read and that reads reply. THIS WAS THE REPLY. MONIKER: Curious.. "DID YOU ACTUALLY USE THE M-WORD? YOU NEED TO GO BACK TO THE HOUSE OF PAIN" ok I'll tell you this reply freaked me out. Litteraly stunned me and I clicked the return button without thinkning to save the thread first and when I got back to the main posting board all referance to my posts and thier answer to me had been deleted. Something is very much wrong with this group Nuspa. IN any event no more than 1 week after all this takes place, My girlfried who had lived with me now for aprox 8 months with no problems or symptoms becomes heavily infested and has been in full blown morgellems hell since then. House of pain is right I mean Ill rather it be me and go through it all over if it meant she wouldnt have to at all.. by the way I contracted this while staying in a hotel for long timeframes while out of town working. so it would have been easy to pick me out for some unethecle research study or experiment. Ill post more info on this at www.nondelusional.com in a few days. Anyone one else had problems like this at NUSPA?
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Post by Orion*** on Aug 12, 2005 5:07:22 GMT -5
I went to the NUSPA board today for the first time---I was not impressed--what cought my eye was them telling me that every thing is monitored and could be deleted--only their approved posts would be allowed to be put on the board, I do not like the way it is run so doubt very much if I will spend much time there. I don't like some one telling me that if they don't agree with what I say they will not put it up. Ski-roo-it---and feed um fish. I believe there are even lurkers on this board that are keeping an eye on things so to speak. I hate to join the conspiritor gang but hey--I wonde if paranoia would happen to go along with DOP. Pass the pills--
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Post by Simpleton on Aug 12, 2005 5:52:33 GMT -5
So don't go there. ;D
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Post by Orion*** on Aug 12, 2005 6:22:38 GMT -5
OK :-) m~(*u*)~m
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Post by Dear Hope on Aug 12, 2005 12:23:17 GMT -5
On behalf of Lois who runs NUSPA and is unavailable because her sister passed away day before yesterday I can tell visitors to LymeBusters that NUSPA receives no financial support except from people who use the board and donate now and then. Like others Lois is a volunteer 24/7 trying to help.
There is no reason to "dig." There are better things to do with our time. You do not sound like hope or peace to me.
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Post by Beyond control on Aug 12, 2005 13:41:09 GMT -5
This kind of thread helps no one. Hope, gotta tell ya, you are missinformed. nuspa had nothing to do with the research and the oklahoma study if that is what you are referring to. They are supporters of the study for whatever reason. Southcity, making accusations like this on a public board that you can't back up is just hurting your own credability. Whether it is true or not there still isn't a damn thing you could do about it. Think you need to redirect your focus on something more possitive and productive that won't hurt pople who are already suffering enough.
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Post by Mandy on Aug 12, 2005 13:45:35 GMT -5
My guess would be they are finded through privately handed out contracts by the government that aren't avail for public view (like the new energy bill I beleive)
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Post by Factual on Aug 12, 2005 14:29:34 GMT -5
You have not read the paper or if you did you had no comprehension of what it says. It is a moot point. The peer reviewed paper is published!!!!! It tells you right in it that it was volunteer project and people agreed that there were no promises because it was research. People who accuse those who try to help us make my blood boil worse than my skin itches.
Y'all need to get a life. You are trying to make a war where there shouldn't be one. I just want to get well but I am no different than Reeve's widow who has lung cancer.
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Post by southcity on Aug 12, 2005 14:53:44 GMT -5
Ok I have focused on more important and better ways to attract the kind of attention this disorder calls for. Its www.nondelusional.com PEOPLE I NEED MORE OF YOUR STORIES AND PICTURES!!! So far my site has attracted a large number of reads from the senate. (us.house.gov) various universities and numerous commercial institutions throughout the world. SO EVERYONE IF YOU HAVENT ALREADY DONE SO SEND THOSE STORIES AND PICTS AND FILL OUT THE SHORT QUESTIONAIRE!!!! IT IS WORKING.. Now back to nuspa. As far as I can see there is nothing being presented by that site that makes this illness credible. NOTHING except a few links to various studies. iF anything its helping the DOP skeptics. Pictures are one form of proof, personal details along with picts are even better. The point I think is being missed is I was told I needed to "go back to the house of pain" and then the posts were all deleted. Only a webmaster or moderator approved by the webmaster can do such a thing and to do it so quickly. Lets face it people this problem is getting hard to pass off as a bunch of kooks, the numbers are getting to high and I do know one thing for certain, This is not a natural pathogen. If the truth is ever found out regardless of whom may be responsible for its release or simple monitoriing of it, peoples careers will go right down the tubes. So Simpleton Have you submitted your stories and pictures to www.nondelusional.com ? or would this be another waste of ones precious productive time?
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Post by ANTHILL on Aug 12, 2005 14:54:23 GMT -5
I don't think there is anything that sinister going on with nuspa Lois deals with things the way Lois deals with things thats what she does best --do you know why? because it's Lois" What (Hope -Guest) says is true funds to run the board ether come out of her own pocket or or donations some times its a eek by type thing I think Lois wants this condition to be recognized as much as any of us what ever it is called in the end We really need to be concentrating on what is it?--how to kill it--what it Eats? --what is its social structure does it have? live young or does it lay eggs like a chicken? does it have a symbioses with another organism that it needs to live? if so how do you kill that organism? --what treatment will break the skin barrier and will affect the parasites and not kill us or harm us ? How to spread the word that this is real and that we are really suffering and that it is the Dr's that suffer from delusions of grandeur not us We are wasting precious time to do otherwise
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Post by southcity on Aug 12, 2005 15:10:36 GMT -5
I almost forgot you, Beyond Control!! Have you submitted your picts and stories to www.nondelusional.com ?? ps. I believe there is very little beyond my control concerning me, myself and I. And yes, my site is a selfish venture on my part and is my damn way of doing something positive. I want to get well and back to normal. And anyone one else that wants the same thing as me is more than welcome to come along for the ride. As a matter of fact I NEED all of you and offer the hope of valid research beginning soon. So, my intentions are honest and done with integrity, and if anything will help me get better I will embrace it wholeheartedly. I was not attacking nuspa or lois, Lord knows the last time I did that My life went to hell again with this illness as well as my girlfriends. No attacks, I merely told what happened to me. My story believe it or not.
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Post by ANTHILL on Aug 12, 2005 15:30:02 GMT -5
Oh' I beleive it' ;D like I said lois does what she does and I aint worrying about it" thats why I am here LOL" I will have to pop into your website and see how my stuff looks and I will have to submit my story as soon as I get it done right now I have other things on my plate thanks"big time
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Post by Guest on Aug 12, 2005 15:37:32 GMT -5
I think some people are confusing Deb of the NPA with Lois of the NUSPA?!
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Post by Beyondcontrol on Aug 12, 2005 17:12:23 GMT -5
I almost forgot you, Beyond Control!! Have you submitted your picts and stories to www.nondelusional.com ?? ps. I believe there is very little beyond my control concerning me, myself and I. And yes, my site is a selfish venture on my part and is my damn way of doing something positive. I want to get well and back to normal. And anyone one else that wants the same thing as me is more than welcome to come along for the ride. As a matter of fact I NEED all of you and offer the hope of valid research beginning soon. So, my intentions are honest and done with integrity, and if anything will help me get better I will embrace it wholeheartedly. I was not attacking nuspa or lois, Lord knows the last time I did that My life went to hell again with this illness as well as my girlfriends. No attacks, I merely told what happened to me. My story believe it or not. No thanks, but goodluck.
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Post by rickndebby on Aug 12, 2005 20:13:24 GMT -5
We can do more with our time I do agree however it sure does make a person think that maybe there is something to the idea of a '' cover up " ...I want to believe that it's just government red tape and the slow methodical ways of mainstream medicne at work here...but stranger things have happened............
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Alex USPdB webmaster
Guest
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Post by Alex USPdB webmaster on Aug 13, 2005 8:27:42 GMT -5
In regard to NUSPA filtering posts, it was temporay and was due to a "spammer". I still don't really know what this spammer or any spammer does. They were filtering out posts containing email addresses or web links. I had just started a thread announcing an informal survey about USP and Morgellons when they started filtering. My post contained a link to my website and the survey, but it was not deleted or blocked. Whenever I replied to my own post, it would appear close to the top of the topics list, more people would see it and go to the survey. I hoped that some people would reply to my post and help keep it high on the forum listing, but there were NONE! THen I noticed in the total views and replies that several people had replied but they weren't posted. Recently, I posted at NUSPA that I had another survey, a more comprehensive survey, online. They were still "reviewing" posts for the spammer so I didn't put any links or email addresses in the post and it never got posted at all! Yesterday, I saw an announcement that they had stopped the filtering and all posts were now immediately up. Today, the entire NUSPA board is offline.....or is it just me? I have gotten a lot of good stuff at NUSPA and so I would say, take the useful stuff wherever you find it and avoid wastes-of-time such as conspiracy theory developement. BTW, my surveys on "Source, symptom and remedies..." are still online. There is a 20 question poll and a detailed survey. If you have USP or Morgellons symptoms, go here: home.comcast.net/~usp-db/index.htm Alex
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Post by skytroll on Aug 13, 2005 10:33:54 GMT -5
Alex,
I too do not know where to submit.
Great going. Surveys may show a thread, other than the ones we pull out, that may indicate some common ground.
Good work.
skytroll
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Post by Administration on Aug 13, 2005 10:47:17 GMT -5
South city, Im sorry for your experience at Nuspa. I really dont know what to do or say about this. I have been friends with Lois for many years now and if all this was going on, I think I would have known about it? I think since the NPA got involved there has been so much mistrust there, and as with any Government funded organization maybe thats where it comes from... so many just dont trust anymore. I know when Lois found someone to look at our lint ball samples she asked for donations to pay this fellow and ended up paying him the rest out of her own pocket. I am in a position now where we have asked to please not use this board as a trashing post for Nuspa. We have also said we wouldnt be a deleting board. I am totally for people being able to post what they want when they want so they are able to express themselves, and any of their ideas on this mess. So let us concentrate on the diseases more, the symptoms, and such, and less on Nuspa. Lois runs her board as she believes she should just as we do here. We may not have the same beliefs, but I do believe we all have the same interests in mind.. helping others. Lets not keep bringing up Nuspa as it puts us here at LB in an awkward position. We dont want to have to make this a deleting board as well.. Let us be a peaceful group and wish Lois our condolences on the passing of her sister. I really do believe we all just want to find an answer to all this and get better.
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Post by TonyM on Aug 13, 2005 12:14:03 GMT -5
I agree that we need to keep to the task at hand and not be distracted by other stuff that just doesn't help anyone in the first place. Focus people, Focus. I know some things can pee a person off, but then ya lose your Focus on what your trying to accomplish here. Right!!!
like someone said before,,,,,,,Be The Bug, see the bug, Kill The Bug!!!!!
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Post by FromHorsesMouth on Aug 13, 2005 14:17:48 GMT -5
I called NPA yesterday and flat out asked. Yea me!!! Person said only $$$ NPA has gotten from government was from EPA with Los Angeles county for a lindane cleanup of LA water and sent me this link. www.headlice.org/lindane/petition/award.htmNicole
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