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Post by Brian on Aug 10, 2005 21:08:07 GMT -5
The time is now for us to do something as a TEAM.Of all the members in this group as well as the Mogellons foundation,I'm calling on someone...anyone to come forward and lead us in a march,a demonstration,or what ever is neccesary for the people of America to look at us a group that is recognized from east to west and north to south.Lets be heard NOW.I'm not one of high education or knowledge in what is neccesary to do this,but I'm sure that there is someone in "our" group that is capable of organizing this.The regional coverage that this disease gets is good,but if it were national.it would be undeniableto everyone that sees or hears of it.Can we do this ?I think we have to do it...and now!I'll help in any way I can.Lets get some good heads together and make a run at it.Right now we are a bunch of individuals posting independent threads.between one another with leaks here and there to the medical world who may or may not be pushing as hard as they can. All I do know that a lot of lives and families are being torn apart and/or destroyed,while those around us who are not affected are forming life long theories on how crazy.dillusional orunstable we seem to be.We need to set the medical world straight on the same page as those of us involved.Start sending in your ideas and lets get something out on the road by this year!!!I have a few of my own and am hoping that if we get the ball rolling....that all of us who are afflicted with this damn thing ...will jump to get on the wagon.Where are our leaders.Lets do it before far more worse things begin to happen! ! !
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Post by skytroll on Aug 10, 2005 22:07:16 GMT -5
bks27,
I am ready. What are your ideas? Spit em out. It isn't that far to Washington D.C. Lets start some sit ins at these Universities that are genoming crap. Lets hit our state capitols all at once. Who's from Michigan? Let's set a date to meet in Lansing.
skytroll
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Post by jeff on Aug 10, 2005 22:15:53 GMT -5
dr swartz is already leading the march...he has written a book submitted publications to medical journals,,contacted the cdc..contacted other doctors on our bahalf...one man can have more power than 1000 of us alleged DOP,s......if we march thell just say your crazy
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Post by Brian on Aug 10, 2005 23:00:02 GMT -5
Maybe I dream a little too much....but it has to have IMPACT !.There has to be an answer that will activate and motivate this country into recognizing the fold of things that may come....if there were 1000 of us 5 years ago and there are now 6000 of us known(possibly10's of thousands more that are unknown)whats that in math 5 or 10 years from now.We can't stop it!My thought on it...?lets line up volunteers from each area of the countryto begin a march to the capitol.....being relieved by another every 7.....10....or however milesdown the road .Something like the lighting of the Olympic torch.I believe that we would have volunteers come forward to take over for the next walk as we progressed along on our march....this is good guys ....keep it comming.....let me hear some more ......YA'LL are out there ...come forward....is it Chas"s quote...? as one we are ....But together we can....lets line up get together here ..................
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Post by skytroll on Aug 11, 2005 0:09:49 GMT -5
bks27,
I don't accept the DOP, Jeff, but bks got some guts. Sure, Swartz has started to help what he thinks is from s maltophilia, but, he does not cover the fibers. I know we march through educating people, but, I do believe like the minutemen, we need to take some action.
Maybe something like this would wake up both parties in Washington and focus on the people as it should be. We are hurting out here. They do not have a clue. And.....if they did...they definitely are part of the problem of covering up what has been done to us.
We need to dig deeper into Academia, the Institutes, policy making, who is lobbying and for what. This is our country, and that includes the medical community. Who left and appointed them gods? Are they the 5th arm of the government? The media already has been lost to the government, now the medical community?
Can they not think out of Pasteur's box? Herein lies the problem. Maybe there is another way of thinking in how we get sick.
We the people want a knowing medical community whose main goal should be to help people get well, not appease the drug companies and their genome producing scientists.
Thank God for the scientists looking for the truth in science. They are out there.
If we could link up with them, that would be cool.
Anyway, it took 400 activists in Berlin to make a point on refusing gm foods. They gathered in a field to protest and a large number of police showed up. But, they got the point across.
skytroll
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linda
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Post by linda on Aug 11, 2005 11:29:00 GMT -5
Hi there,
I've said the same thing many a time. I don't get any serious responses. Most people don't want to "make waves," but what's our alternative? A slow, frustrating, contagious death.
I think a more active media approach might help. Why don't we, for instance, all contribute toward a full-page ad in the New York Times? Certainly many people that have this disease have not happened upon the Morgellons web-site. This would both draw attention, and guide others who suffer in silence.
I might appreciate Schwartz's research into our disease, but I ain't counting on him to be my savior. He is first a foremost a businessman. Sorry if my opinion offends Jeff, but I'm just not ready to join that cult yet.
Take Care all, Linda
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Post by Confused on Aug 11, 2005 11:55:31 GMT -5
But what do we do about this? It doesn't describe me or the people in my e-mail group. I am not willing to say I've lost my mind as an explanation for my symptoms. Where is the data to support these claims. Even the worst scientist will want to know!! "The most significant element of this infection, appears to be the effect on brain function. Mood disorders, such as depression and Bipolar Disorder, are extremely common in this group, affecting well over half of all individuals reporting symptoms of Morgellons Disease. Nearly all people with this illness report extreme difficulty with mental concentration and short term memory." "The majority of children with this illness have ADHD, ODD, mood disorders, or autism. Among a group of 47 children with this disease, thirty of them (64%) have psychiatric illness, and five of them (10%) are autistic. " Morgellons Foundation
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Post by Brian Shimek on Aug 11, 2005 12:44:00 GMT -5
I do not plan on waiting for a savior either.....How many of you have heard of Cindy Sheehan......?In about a weeks time she has gained national attention.what did she do ? She took a tent and pitched it in a place well picked....near Crawford Texas......about 2 hours north of where I live....and every paper in the country has run a story on her.SHE IS BUT 1 WOMAN WITH 1 PLAN FOR1 REASON....and she is being heard,although I don't agree with her which is a whole other issue in its self...but....she has made the whole country hear her !
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Post by Brian on Aug 11, 2005 12:50:30 GMT -5
And to add to this.....most if not ALLof you with this disease...ARE NOT dilusional !How can one refute what 5000 people are saying when all are with the samples !What I see and others see are 1 in the same.Get your microscope from Radio Shack and see if what you are looking at is not 1 in the same with what are at this site . www.dpref.com/index.html
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Post by jj on Aug 11, 2005 17:25:45 GMT -5
But what do we do about this? It doesn't describe me or the people in my e-mail group. I am not willing to say I've lost my mind as an explanation for my symptoms. Where is the data to support these claims. Even the worst scientist will want to know!! "The most significant element of this infection, appears to be the effect on brain function. Mood disorders, such as depression and Bipolar Disorder, are extremely common in this group, affecting well over half of all individuals reporting symptoms of Morgellons Disease. Nearly all people with this illness report extreme difficulty with mental concentration and short term memory." "The majority of children with this illness have ADHD, ODD, mood disorders, or autism. Among a group of 47 children with this disease, thirty of them (64%) have psychiatric illness, and five of them (10%) are autistic. " Morgellons Foundation Yes, you are confused. I think you misunderstood what you quoted based on your statement. Sorry If you missed it but I do belive this was brought up elsewhere under the same context and someone responded to your concerns. The quote does not imply "you have lost your mind as an explanation of your symptoms" as you so stated. It implies just the opposite. ............ You asked where the research was to back this (quote) up? These are doctors diagnoses from registrants. Did you miss that part when you registered? I do hope you at some point are able to grasp the significance of possible damage that can result FROM this condition. Because denying that in the long run could be damaging to ones health. Hope this helps. Still hangin, JJ
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linda
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Post by linda on Aug 12, 2005 14:55:52 GMT -5
I had spoken with a rheumatologist here in Sacramento who has been researching and treating patients who have all of our symptoms except the fibers, or, at least, he was not aware of this particular symptom. He said that the disease, which he did not specify, interferes with dopamine production. Elevated dopamine creates disorders like ADHD (my son) PTSD-like symptoms (me), and, in some severely elevated levels, Schizophrenia. Whatever Morgellons is, it keeps me and my kids hot-wired round the clock. (Some of you have noticed my sometimes aggressive temperment). I often cannot keep up with my thoughts. Like occurs in bipolar disorder, I have great moments of inspiration, but I get bored with my projects before I finish them. My mind races a lot. Nonetheless, I am not in any way "crazy." I am simply aware that there is some mechanism tampering with my (and my family's) nero-functioning. I may not even think that this is always a bad thing in that I can have moments of genius, but that it does make me tired and will probably contribute toward early Alzheimer's.
I'll be seeing that doc a spoke of after the new year.
So, how about the full-page ad idea?
Linda
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Post by skytroll on Aug 13, 2005 0:21:18 GMT -5
Linda,
What would we be advertising?
skytroll
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linda
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Post by linda on Aug 13, 2005 0:44:46 GMT -5
As long as the paper gets our money, we don't have to be selling anything. My idea is to present Morgellons.org as a non-profit reaching out to those who are in need the confirmation that they are not getting from their DOP docs, and to inform the public about this disease. Breast-cancer awareness, Muscular distrophy awareness, AIDS awareness, why not Morgellon's/Lyme awareness? Most non-profits for major diseases have on-going media campaigns. I get "free" mailing stickers in the mail all of the time asking for small donations for children with cancer. While we are not well organized yet, we need to start somewhere.
It's just an idea.
Linda
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Post by skytroll on Aug 13, 2005 1:07:42 GMT -5
Linda,
I wonder if the New York Times would even do it. After all, they are part of the fourth arm of the government. I tell you what, if they refuse to do it and we have the money, then we know there is a coverup. It is the media's job to inform the public. They are so shabby at it as is the fifth arm of the government, the medical community. HEHEHEHEHEHEHEH.
I think we should do it. If the NY Times refuses, lets go to the Washington Times, The Chicago Tribune, the San Francisco Chronicle and the Miami Herald?
Who out there can do a good ad? drawings too? Go for it. Come on everyone, lets do our part. I think it is a great idea, Linda.
skytroll
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Post by wolfe1 on Aug 13, 2005 17:20:03 GMT -5
to skytroll The paper is great but I don't think we should give up the idea of a tv spot.. Someone like Montel Williams would maybe pick up on this. He would get an outpouring of response from people all over his viewing audience. People there are so many with morgellons who have never had a computer or maybe even the finances to go to a doctor when ill. I wish we had finances to do a traveling video trail. We could interview members and hear their stories and then video the lesions and have a digital camera to take pictures of samples they have. magnified We represent every type of person across the nation. We should be credible since we have no reason to lie and we cant be called delusional if they see the truth. You all have saved my sanity with the site but I do respectfully have one more suggestion. We could press the politics to hard. We first need to let the nation of people know the condition and how we suffer, and how it changes our lives so drastically. Then the opportunity would come up[ after the outpouring of responses. And I really believe there would be. Then people will be asking why something hasn't been done and why doctors are not assisting us,. Then the investigation of why would open up all kinds of agendas and tv and news interest. I would help physically, emotionally, politically But it would also be GREAT to be able to go back personally and interview the physicians who humiliated and shamed us.wolfe1
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Post by binarky on Aug 13, 2005 19:46:01 GMT -5
I agree that we should do what we can to get this noticed. I have lost a husband, job, home, etc. because they say if the doc can't find anything then it is probaly stress. I am so sick of this! I don't need sympathy anymore for all the loss. I just need to be HEALED so I can carry on with my life and be the mother I should be to my children. I won't go into detail but I have gone thru hell and back because I am telling the truth and people refuse to recognize this as a disease. I am willing to do what I can nationaly,locally, or however anyone asks. I am so tired of this controlling my ever waking moment. Which is a lot these days!I live in Little Rock, Ar. Wolfe1 I found the report from Jennifer Akers about Morgellons. I have the name of the doc from that report also. His name is Dr. Nate Smith, he specializes in infecious disease at the Arkansas Department of Health. Guess who I will be calling first thing Monday?
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Post by wolfe1 on Aug 13, 2005 20:59:37 GMT -5
binarky, Please let me know what you find out from the Arkansas Dept. of Health. I should follow up your contact with the ADH and wouldn't it be great if we had 50 more Arkansans to follow up. I believe they are out there but just are unaware of this site and all of us suffering, It is not something you go around talking about . We all want to be healed physically and emotionally. wolfe1
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Post by binarky on Aug 13, 2005 22:56:07 GMT -5
Wolfe1, I found out a couple of nights ago that my best friend of 20 years now has symptoms. She thought this may be nerves at first. She stood by me thru this whole thing, cleaning my house, cooking,laundry,etc. I expressed my concerns to her from the beginning that I was afraid of giving this to her. She didn't think it was contagious. Not only does she have the sores on her back, feet, legs, etc. her son (10 years old) also has been diagnosed with head lice. I am a hair stylist. These bugs are the same as what we all have. I don't believe I can not convince 1 doc of doing some REAL research. I have always been able to go to a doc and get the help I needed. I don't understand why people won't give you any diagnosis but DOP. I believe I will be contacting Jennifer Akers. I would like to know if she would be interested in doing a follow up. I am tired of hiding behind the scenes. It's like this......WE either stand up and be heard or continue to stay this way, or worse. I am tired of this. I have also shown samples to docs. They have said.....Well, where did you find these THINGS on you? I CANT see them by looking. I finally told one doc friend that I have been using for 8 years.... HAVE YOU EVER USED A MICRO FIBER TOWEL??? She didn't even know what I was talking about! Then I explained what they were. That she could even by one at the Dollar Store.haha These are the people diagnosing us. I now believe doctors may be able to get their license way too easy! I think it is time they feel as humiliated as we all have. I really don't want revenge (well maybe a little). I just would like to think there IS a LIGHT at the end of this. I hope we all can sit back and be proud and glad that we took a stand. If it is not but to help people in the future. I just want someone to recognize this is really happening. I am so ready to do what it takes to get recognition in a positive way! Not delusional, ya know?ha
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Post by wolfe1 on Aug 13, 2005 23:12:01 GMT -5
binarky I so appreciate your risk-taking spirit. i have determination to find help but I am afraid of some of the risks in coming out of morgellans closet. I work with children as a profession. I am always afraid of being contagious. I spray and wipe off with wet-ones and clean tables constantly. I ask fpr the floors to be sprayed for bugs regularly. I tried to talk to a nurse on my work site and to this day she laughs when she sees me and says there goes the bug-lady. Once again I shut-up with co-workers. I can't lose my job and I pray to God that I am careful enough . I feel I got this from a child I worked with several years ago. The funny thing is that my husband does not show any symptoms nor do my boys.
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Post by binarky on Aug 13, 2005 23:32:14 GMT -5
Wolfe1, Okay.Let me think about this for a sec. I am finished! Everyone I know thinks I have lost it anyway. I would not recomend anyone to come out of this closet til they feel ready. This is horrible enough without anymore pressure in our lives. I appreciate you HELPING ME! If you had not clued me in to the FOX16 report I would not have known about it. I had been suffering for 5 months when that aired without a clue. So thank you! But, I have decided that it is time to press on! I have never been closed in as much as I have these past few months. I feel an urgency about this. I almost feel like I have been put in this situation to help others. I have always had a heart for the NEEDY. I have felt better these last few days. I have found out that this disease has on again off again spurts. I want to take advantage of the GOOD DAYS RIGHT NOW! If there is any more info you can give me from the Ark are please let me know.
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