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Post by shelby21 on Dec 4, 2010 21:44:20 GMT -5
I'm from Vancouver Washington...love what your all doing on here. God bless you all
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Post by Harry on Dec 6, 2010 17:44:32 GMT -5
25 mins. north of Boston,...Bless you too shelby .
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Post by silverangel on Dec 6, 2010 22:00:29 GMT -5
syracuse, indiana northcentral in
there used to be a bunch from michigan, but i think they all left this board.
silverangel
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Post by shelby21 on Dec 7, 2010 12:49:39 GMT -5
Thank you Harry
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Post by Harry on Dec 7, 2010 16:13:10 GMT -5
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Post by itchin4answers on Dec 7, 2010 18:05:12 GMT -5
Hi - I'm new to posting & would like to know if anyone has any ideas as to how the people in Australia can help put pressure on the CDC. Also, how do we get the word out to the medical community & raise pubic awareness? Thank you itchin4answers
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Post by 22122agin on Dec 7, 2010 20:15:52 GMT -5
Harry, Thank you for posting that link. Best to you, 22122
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Post by ccsomething on Dec 7, 2010 20:19:27 GMT -5
Hi I am intersted in grassroots efforts I live in Northwest Missouri. Thanks CC Something
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Post by shelby21 on Dec 7, 2010 23:51:39 GMT -5
Thanks for the link Harry, very informative
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Post by Harry on Dec 8, 2010 7:18:13 GMT -5
Harry, Thank you for posting that link. Best to you, 22122 >your very welcome 2212,.good to be here..and thank you for your kind words. Harry .
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Post by Harry on Dec 8, 2010 7:19:37 GMT -5
Thanks for the link Harry, very informative >you are surly welcome Shelby
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Post by pdidit on Dec 8, 2010 20:37:30 GMT -5
Hi Harry --thanks for joining us! Welcome itching4answers, To answer your question: this is actually the main reason for this thread, in that if we can gather people together here, then we can perhaps take it one more step and forms groups within states or regions, with the goal of making decisions on how we do just that: stir this up and get this disease to the forefront and recognized...I believe it is our only option at this point, because if we do nothing, we will all be here spinning our wheels in our silence for years to come. This is not to say that collectively, we have not made great strides in studying this ourselves and many have worked hard to find pieces of the puzzle that have given us invaluable clues to this puzzle; however the more recognition we receive, the less likely the CDC will be able to sweep this under the rug and leave us here to die in our own misery. The other benefit of more recognition is obvious in that we could possibly get more funding for research studies. We don't have to be alone in this battle...coming together produces a positive energy that I believe we all need right about now! I we can just get the momentum going here, I think more and more people will follow suit and join in this step in the right direction. And I think just knowing people within your own state, will give comfort to most of us.. You might want to check out one of the replies here from Jo, who is from the UK. She informed us that they too were forming a grassroots movement and was graciously offering to share what they eventually come up with. So far, I believe the countries/regions she is actively working with are Ireland (North/South), Scotland, Northern England and London [and eventually Wales]. Here is the link to the page she posted her plans so I hope it works for you [3rd page of this thread] lymebusters.proboards.com/index.cgi?board=rash&action=display&thread=14456&page=3You might want to PM her and send her an email to ask if you can involved there too and see what their plan is to get this disease publicly recognized. We are just starting this thread so I am glad you are on board!!! Let's hope it grows in enthusiasm, because I know I am speaking for many, we are fed up suffering in our own small isolated world. It doesn't have to be this way--but no one is going to do this for us...we have to do this for ourselves, not to mention for our loved ones and children! So please hang in there with us and help us get the word out...! There are people from all over the world and I am sure some from Australia will pop in here from time to time too. Hi Silverangel Glad to see your post too...was just wondering if you had any contact with these others from Michigan and if so, could you contact them about this and ask them to sign into this thread? We need ALL morgellons people to get involved, not just the ones who are currently posting!!! Thanks to all and remember, STRENGTH IS IN NUMBERS, so let's keep this topic ongoing and open for discussion, wherever you are posting or talking to someone...! xxoo Pdidit
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Post by Harry on Dec 8, 2010 21:23:46 GMT -5
Hi Harry --thanks for joining us! Welcome itching4answers, To answer your question: this is actually the main reason for this thread, in that if we can gather people together here, then we can perhaps take it one more step and forms groups within states or regions, with the goal of making decisions on how we do just that: stir this up and get this disease to the forefront and recognized...I believe it is our only option at this point, because if we do nothing, we will all be here spinning our wheels in our silence for years to come. This is not to say that collectively, we have not made great strides in studying this ourselves and many have worked hard to find pieces of the puzzle that have given us invaluable clues to this puzzle; however the more recognition we receive, the less likely the CDC will be able to sweep this under the rug and leave us here to die in our own misery. The other benefit of more recognition is obvious in that we could possibly get more funding for research studies. We don't have to be alone in this battle...coming together produces a positive energy that I believe we all need right about now! I we can just get the momentum going here, I think more and more people will follow suit and join in this step in the right direction. And I think just knowing people within your own state, will give comfort to most of us.. You might want to check out one of the replies here from Jo, who is from the UK. She informed us that they too were forming a grassroots movement and was graciously offering to share what they eventually come up with. So far, I believe the countries/regions she is actively working with are Ireland (North/South), Scotland, Northern England and London [and eventually Wales]. Here is the link to the page she posted her plans so I hope it works for you [3rd page of this thread] lymebusters.proboards.com/index.cgi?board=rash&action=display&thread=14456&page=3You might want to PM her and send her an email to ask if you can involved there too and see what their plan is to get this disease publicly recognized. We are just starting this thread so I am glad you are on board!!! Let's hope it grows in enthusiasm, because I know I am speaking for many, we are fed up suffering in our own small isolated world. It doesn't have to be this way--but no one is going to do this for us...we have to do this for ourselves, not to mention for our loved ones and children! So please hang in there with us and help us get the word out...! There are people from all over the world and I am sure some from Australia will pop in here from time to time too. Hi Silverangel Glad to see your post too...was just wondering if you had any contact with these others from Michigan and if so, could you contact them about this and ask them to sign into this thread? We need ALL morgellons people to get involved, not just the ones who are currently posting!!! Thanks to all and remember, STRENGTH IS IN NUMBERS, so let's keep this topic ongoing and open for discussion, wherever you are posting or talking to someone...! xxoo Pdidit >Hi pdidt,.good to hear from you,.just to run this by you,.would it be easier to make available down loadable petitions,and photo's,.to help educate the public,. so even one person can get a small portable table with a lawn chair to gather signatures at oh,.say like city hall,.subway station,.or at a collage just before classes end ,.and maybe enlist collage student's,.letting them understand they & their Family's could be at risk also??,..and so on..just need a place to send all the petitions and maybe an information center of some kind. Doc Holliday
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Post by itchin4answers on Dec 9, 2010 3:12:39 GMT -5
Hi again, thank you for the great post pdidit. I'm in for the long haul! I will be sure to keep an eye on this thread. Thanks! Strength in Numbers!
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Post by bannanny on Dec 9, 2010 11:39:56 GMT -5
I was just telling pdidit on the phone how great it would be if we could somehow make the words "Morgellons Disease... pay attention" run across people's computer screens all at once on one specified day... and then have a follow up to our plight from there for all to read!!!! Ha!!! Now that would be the way to go... but of course it can't be done. Then again... I think a MASSIVE mailing (especially to the media) on one given day from people all over the world might just have the same effect. So whaddya all think? Is that what we should shoot for??
love ya's ~~ bannanny
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Post by hadenough on Dec 10, 2010 0:54:58 GMT -5
I currently live in Chester County, PA. But I come from one of the 3 hot spots (TX, FL, SF Bay area).
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Post by itchin4answers on Dec 10, 2010 2:43:40 GMT -5
I could possibly help with the MASSIVE mailing to the media. I have a contact at Australian 60 Minutes. What do you think?
Thanks Itchin4answers
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Post by Harry on Dec 10, 2010 11:37:19 GMT -5
I was just telling pdidit on the phone how great it would be if we could somehow make the words "Morgellons Disease... pay attention" run across people's computer screens all at once on one specified day... and then have a follow up to our plight from there for all to read!!!! Ha!!! Now that would be the way to go... but of course it can't be done. Then again... I think a MASSIVE mailing (especially to the media) on one given day from people all over the world might just have the same effect. So whaddya all think? Is that what we should shoot for?? love ya's ~~ bannanny >Hi Bannanny!,...how is this,.ya think this might help?? www.zazzle.com/morgellonsfocus ... I understand the folk's that set this up are not making a penny,..it's just the cost from that site that will make em.
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Post by intertidalwoman on Dec 11, 2010 0:28:32 GMT -5
Coastal Oregon
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Post by pdidit on Dec 11, 2010 1:22:47 GMT -5
Great to have you on board itching4answers...and thank you both Harry and Bannanny for posting your good ideas! Harry, I think anyone who is well enough to get out there to pass out info and flyers, should go for it!!! I know there have been plenty of petitions surfacing now and then and there are also printable literature from the morgellons focus group in health site too. So by all means, to whomever this speaks to if you feel you can do this, then go for it!!! I for one am a bit too sick to participate in this way, at least with the stage I am in right now, but sure wish I could...and know my daughter would help me too! But my heart lies with this idea of a 'gathering' too, since I think we probably need a mass movement in numbers as well as individuals getting involved with passing out handouts for Morgellons awareness. Now see, here was my thought, albeit I know what you are saying harry, that this will take time to accomplish BUT: if we got people in regions working on projects just like you mentioned, then I think this idea of yours would be more likely to actually take place. I don't know what others feel about this, but think that when we work in numbers, people get more pumped about actually following through--at least this is my hope and goal. I had thought about making up flyers and putting it on people's cars in parking lots. And maybe with this literature, giving them links to go to for more education on Morgellons. Bannanny...I like your idea too, massive letters to the media. So here is the challenge and a good reason for this thread ...let's say we all decide to do this on a certain day...how can we get the message out to everyone who has morgellons to go out and hand deliver info on morgellons [whether this is done on a certain day or not ] or do mass mailing to target the media? This is why I think we need to get this organized in some way....which is why I felt we needed to start with the basics on getting together in states and then build on that. I am open to any other thoughts you might have on this on how to go about getting us all together and doing this in a collective way! Yeah, great if you can help with mass mailing itching4answers...whomever you can contact about this would be a great start! So for now, maybe we just need to get going on something, whether we are small in numbers or not...we could all pick a day this month in January to make this our individual goal to passing out downloaded information and/ or continue to talk about about a certain day/ week for mass mailings to the media. But let's keep the ideas coming... Thanks to all who are participating here..! love Pdidit
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