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Post by Hope on Apr 20, 2005 10:29:44 GMT -5
I need everyones help who has been suffering from this disease to help me construct a petition. Having seen many great letters here in the past sent to Senators gives me some hope to to have this make an impact. Here is a link to an on-line petition service that is free to use if this is the route we want to take. www.petitiononline.com/create_petition.htmlWe need the basic questions answered like: Who? What? Where? When? Why? I have volunteered myself in the past to put this together but cannot do it alone and need the expertise and input of all of you here. Much team work will be needed to make this successful and I want to get it right the first time. Please contribute your thoughts as to what we really need and what it is that you would like to see happen. There is great power in numbers!!!! Let’s help to get the awareness out, the public involved, and try to force someone into doing something for us!! What do ya think? ? All constructive criticism is welcome. Peace, Hope
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Post by Hope on Apr 20, 2005 22:53:59 GMT -5
Well now, don't everyone jump in at one time!!!
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Post by gmsscared on Apr 20, 2005 23:53:31 GMT -5
Im willing, we'll see what others think. they might give us thier ideas and we could get it together. k
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Post by bugsalive2 on Apr 21, 2005 0:39:30 GMT -5
Hello,
If we had the recognition that we are a part of a very large group of individuals suffering from a very real and debilitating disease, which is a threat to society as a whole, and that the size of our group is growing daily because of the contagion, groups like the CDC, WHO, and NIH, whose recognition we need the most, can't make an open admission that we are right, without admitting that they were wrong, wouldn't listen, and we were ignored or scoffed at for years while they had their heads buried in the sand. Who can put pressure on these groups, and force them to be honest? Whoever it is, that's who we need to petition.
Bugs Alive
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Post by Hope on Apr 21, 2005 18:51:34 GMT -5
Thanks all for the encouragement, information, and contributions. Your correct Bugs, figuring out who to target is not easily. I suggest that once we figure that out, we handle it the way I handled my last doctor’s appointment and just demand things! The squeaky wheel gets the oil you know? What I want to see is funding ($$$) and support (experts in the field) given to the research foundation as well as doctors who currently treat this. The CDC has research doctors that work on stuff like this. Couldn’t they create a position or lend out one of their doctors to the research foundation? Yes they could! I wonder how many doctors would still be calling us delusional if they knew there was money given out to treat us? I want all doctors to become very familiar with the name and symptoms of this disease (awareness). Couldn’t info be sent out through the licensing borough and made to sign off on? I want a cure (God on our side). Pray hard!!!! Now, as I recall, Mary said that Senator Santorum (Pa.) helped her set up the research foundation. I’m sorry but I still have a problem with this guy, but that’s another story. The good thing about it is that republicans are open to helping us. So, what do you guys think about holding ALL of our Senators responsible for making the CDC or who ever, do their jobs? And I’m not talking about asking them for help either, we are demanding it now. I think that they need to know ON PAPER that by doing NOTHING about this disease puts others at great risk. This should shift the responsibility to them at that point. They also need to know that a whole lot of other people know and we can conceivably get thousands of signatures. Who knows, maybe hundreds of thousands? We need to hit this on a federal level since so many people from different states are affected. I ran across a site for people with this that are politically active from the Bay area, I hope I can find it again. If we can organize we will have people from everywhere that they cannot ignore any longer. POWER IN NUMBERS!!!! Bugs, you mentioned the CDC, WHO, and the NIH. Who do you think can provide us the most help once they do start to help? Do we really need them all? If you could pick just one, who would it be? To address your concern about agencies who have been at fault in a very big way, I find it best, and think it will work to ignore their past faults and incompetencies for right now. We should ignore their denial and just ask them what they intend to do about this. Once they see that we have moved past the “denial” stage, they might just do it too. They would have to. We know we are right and all anyone would have to do is observe just one of us in a controlled setting to see for themselves. We have to challenge that denial in order to move past it. Gmsscared, Thanks for the offer, I will need you and will hold you to it.
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Post by victoreah on Apr 21, 2005 19:52:04 GMT -5
DEFINITELY count me in, Hope! I agree that if we can gather as ONE body and make our voice heard, it could make an impact.
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Post by dugpile on Apr 21, 2005 20:35:09 GMT -5
I'm here for whatever I can do!!!!
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Post by Mary on Apr 21, 2005 22:14:01 GMT -5
Count me in! Mary Contact me at either email address at bottom of the homepage and I'll help in any way I can: www.Morgellons.org
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Post by bugsalive2 on Apr 22, 2005 0:05:36 GMT -5
Hello,
I will help anyway I can. Anyone that wants to can email me at weekend_storm@yahoo.com
Bugs Alive
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Post by Skytroll on Apr 22, 2005 1:53:56 GMT -5
:-/I like the idea of a petition. We could hit up everyone in Congress, Senate, and Whitehouse.
I did send a letter to the President. Didn't hear back though. Did hear from my Senator and he said that he will take great interest in this when it comes before the Senate. So, I must have hit a chord there. Or there is something in the works already.
The problem with the CDC, WHO, and NIH is that they are trying to label this as something else. That happens so often when the protocol must be followed.
I am willing to help with this.
We could do a full court press within a certain period of time, say a month and send the petition to our local folks, city, county, state, house, senate, President.
If we press hard enough in local papers, local tv, health departments, and the state medical boards we might be able to at least get some plugs.
I did contact the Detroit Free Press and they said that nothing like Morgellons is on the peg board. Whatever that means. I wrote back and received no answer. So much for them, but, if we hit the Drudge report, Michnews on the Internet we might get somewhere?
I am thinking about pitching an article for Newsweek.
It would be like running for president, except we all would be running straight at the medical boards. AMA has followed Pasteurs path. We should be following Bechamps path.....a little history might be helpful in the venture too.
I think the higher ups in Medical Academia know what this is but are mum on it. Rockefeller Institute of Medicine, Rice University, Harvard, UCLA, Stanford, Livermore Labs and the big one Oak Ridge National Labs might be places we could ask if they might know what this is?
Just suggestions.........Not to confuse........
It has to do with microbes, I believe. The parasites are there because the microbes have turned on us and the bacteria draws them to us.
Most doctors I have seen say that if this was Filaria, it wouldn't be in the US. Could it be they are in denial as is the CDC, the WHO, and NIH? Or is research now centered on genoming, cloning and the like?
We could be very frank about this and say how it is ruining our lives and could be extremely contagious.
Just some thoughts, throw out what stinks and keep what is of use.
bye
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Post by Hope on Apr 22, 2005 14:20:23 GMT -5
Alrighty, we are on a roll! The research foundation has offered to provide the much needed expert support in helping to get this together. It’s up to us to get the number of signatures we need to make the impact. I would like to know what states all of you live in so we can come up with a game plan on how best to proceed. I think it will be necessary to have at least one person from every state that is willing to help this cause and be a contact for it. Someone will have to handle the signatures that will come from sources other than the net. Let’s brainstorm for some organizations and people that we can target to get some help. Just a thought but I happen to know that Michael Moore’s website has links for people to sign petitions. michaelmoore.com/takeaction/dosomething.php I would really like to keep this a nonpartisan issue but I’m not above getting help from anywhere or anybody I can. If we wrote him a letter that said what a runaround we are all getting from the agencies that are created for, and funded by tax payers to handle such a matter, I’m sure he will help. Please tell me if you can think of any other person or websites that can provide a link on their site to our petition. Another idea could be for some of us to commit to phoning/e-mailing local activists organizations that would be sympathetic to our cause. United for Peace and Justice, maybe some Lyme organizations, other boards that sufferers visit and post at,…… We need to make a list of these potential sympathizers, organize it, and assign responsibilities for contacting them. Let’s set some goals too. How many signatures do we want to obtain that is realistic? We need a goal to shoot for so we can access our progress. With 1900 people registered at the foundation already we have a good start. Mass e-mails can get awesome responses. What kind of time frame do you all think we should set in order to be able to construct this and get it up, running, and out there? This is a lot already so I’ll stop for now and let it simmer. Please give your ideas!!!! I’m still pretty new to the name of this and not exactly sure if I am the best person for this job. So, step up to the plate!!!!! Peace, Hope P.S. Thank you all for your continued dedication with this. Skytroll, keep those ideas coming, you have got my wheels turning.
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Post by skytroll on Apr 22, 2005 17:10:57 GMT -5
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Post by adapted on Apr 22, 2005 22:11:06 GMT -5
I'm sorry I can't step up to the plate, but I've had the wind knocked out of my sails, and I'm treading to keep my head above water. Count me in for anything that isn't too demanding though. I'm jaded from some personal stuff, and just not up for contributing any constructive ideas. I really appreciate what you're doing, Hope.
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Post by Administration on Apr 22, 2005 22:26:32 GMT -5
I'll do anything I can to help! I am dealing with Santorum right now. Getting Lyme petitions together. Lets join forces and help each other. Afterall.. we are all a family here. I do believe to make them look into Morgellons will force them to look into Lyme and vice versa.. even tho Im not so sure the two diseases are connected, there is something there that I cant help but wonder about. Puuush Santorum.. push him right now while Im also pushing him. Lets light a fire under his butt while the fire is still hot!
Kerry
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Post by Hope on Apr 23, 2005 13:24:40 GMT -5
Hello Kerry, I want to start off by thanking you and Patti for the wonderful job you have done with this board! Where would we be without ya? Knowing how much work you all have put into this is totally amazing. Thank you. I will call Santorum’s office Monday morning. What exactly are you pushing him for? Lyme? Let me know so I can figure out what to say. I believe that Lyme and Morgellons are related as many others do too. It’s got to be! Never thought for one minute that I had Lyme but knew as soon as I read about Morgellons that I undoubtedly had it. That is exactly what prompted me to get tested and I came back Lyme positive with a co-infection to boot. I also believe that the Lyme connection can be used to our advantage since it has a higher creditability factor and the general public would be more receptive to helping and signing petitions. Even if it is not related, they will have to prove that won't they? Adapted, You can help very easily without doing too much. All of your research has surly given you some wonderful knowledge of sights that might be open to helping us. If you can, please list addresses like Skytroll has above it would be very helpful. Thank you. Same thing goes for everyone else. I’ll copy and paste them into a file to be used later. Skytroll, You are our official Michigan Contact Coordinator! 8-)Congratulations!!!! Please send me a message with an e-mail address so I can contact you directly when I need to. Do you know who Congressman John Conyers is? He is a good guy! You will be contacting him for sure so get familiar with him in any way you can. johnconyers.com Gmsscared, Bugs Alive, Victoreah, Dugpile, and Kerry, Please let me know what states you all live in so we can cover our bases and I can give out more titles. I’m in Pennsylvania. To EVERYONE, Please, please register to vote if you are not already. Our elected officials won’t ever help us if they do not think that something is in it for them. Like our votes. I’m not asking any one to actually vote but to register since they always check to see that. This can be done on-line at the link below and does not take very long. www.yourvotematters.org/vote/index.cfm Has anyone thought about the goals yet? Please give me your input on this. I want all of you to know how encouraging this is and think it is a step in the right direction to finding a cure, and at the very least, getting the help we so desperately need. Peace, Hope
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Post by bugsalive2 on Apr 23, 2005 16:05:18 GMT -5
Bugs Alive/Rick Grove--Oklahoma
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Post by Administration on Apr 23, 2005 16:33:22 GMT -5
The Lyme issues I am working on are
1) Insurance denial Insurance companies are more and more denying not only expensive Lyme dr visits but also denying the meds we need. This is discrimination against a particular disease. If a Lyme literate Dr feels that a certain med should be used, the insurance company should have no right to deny us what we need.
2) Doctor denial Local Doctors are unwilling to even accept that chronic Lyme disease exists. Education is the key to early detection and prevention, yet most local Drs wont even do a lyme test, some Drs here run Lyme tests and get back a positive CDC Lyme tests and then lie to the patients afterward.. only after the patients gets to a LLMD and has records transfered do hey find out.. which is usually too late.
I just want fairness.. we deserve the same treatment and a chance at a better quality of life as anyone else with a chronic disease, yet we are treated as if we dont matter because the word "Lyme" seems to be a dirty word to the Drs and insurance companies.
These are my issues.. I never stop. I write to everyone I can about it and just annoy the world about it. Now Im back with Santorum again..
This fight has now gone on for 30 years and its way past time it comes to an end.
Those are the issues I am working on. Kerry
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Post by skytroll on Apr 23, 2005 16:55:27 GMT -5
Hello Hope, Kerry, Patti and all, I know of Conyers, Levin did respond to me too. Our guy in Congress is Pete Hoekstra. I can work with both. Please check out this website. Could be Morgellons. www.euroamericanhealth.comLook at pleomorphism. and pics. I will keep looking and looking, recording, and looking till we get some answers. Bless us all and may the Creator of us all lend us a hand. bye
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Post by Lisa on Apr 23, 2005 20:42:46 GMT -5
If I'm watching the boob tube, sometimes I wonder which celebrities may have this. I check out their skin and hair. Anyway, this is going to sound pretty silly, but it just crossed my mind so.......I'm sure there are many fan of whoever websites out there, and if one should be inclined, they could always write them for help. There are those that already have their causes---like Aids (Sharon Stone, Liz Taylor), Michael J. Fox with Parkinson's, breast cancer, etc... What I'm saying is... if you are a sports fan, maybe write your favorite player, write your favorite musician, actor, t.v. personality, author, whatever. I'm sure some are looking for a cause that will put them in the spotlight. You are probably thinking like I am ..."Who would want to put there name in front of a bunch people suffering from a delusion (not)?" Well, ya just never know.
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Post by Hope on Apr 23, 2005 23:29:53 GMT -5
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