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Post by itchin4answers on Dec 11, 2010 1:46:24 GMT -5
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Post by teacherkl on Dec 11, 2010 8:24:38 GMT -5
Bananny, There is another post regarding the CDC which mentions 1/11/11 as an awareness day. We need as MANY people as possible to spread the word about this "awareness day" and to post in on other blogs, websites devoted to Morgellons as possible. On this day, we should all attempt to get as much word out about Morgellons as possible. I was thinking Facebook would be a very good way to go. If we each have a status message devoted to Morgellons with links to the MRF, it would at least get word out- and we should instruct our families/loved ones to do the same. The message could be something like, "Today is Morgellons Disease Awareness Day. Morgellons is a very real and debilitating disease which an estimated 50,000+ people in the US alone are suffering from. Currently, there is no known cure or cause for this disease, and the CDC has yet to recognize it. Please help spread the word by posting this as your status and by going to www.morgellons.org/ to get informed about this disease." If Morgellons is used in enough statuses in one day, I believe there's some type of trafficing recorder on facebook/google that might even alert someone "higher up" that the public is now starting to pay attention. We could also mail packets on that day. But I truly think facebook/twitter is a great way to go. I think we need to be very careful about including very graphic pictures in packets, etc. We don't want to shock the public, who might already be skeptical of what we have to say. And although many of the symptoms are shocking, keeping things to a minimum might go farther for us as far as building awareness. I also think Bumper Stickers might be a great way to go. A sticker that simply says "www.morgellons.org - get informed." might just get people curious and wanting to learn for themselves. I think the simpler we are in our message, the more people will want to investigate for themselves. Remember- 1/11/11 is Morgellons' Awareness Day!!!!!! Tell EVERYONE!
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Post by Harry on Dec 11, 2010 14:08:54 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 Thank you pdidt,..but I think you missed my point,.if you had a petition along with photo's,.that would have the right language for Congress to move & make the C.D.C. accountable for a better or more comprehensive study,.we need the General Public to sign such a thing,.& get involved,.& to help educate them,..heir is where the numbers come into play,.because the General Public is at risk,.we need them!! if any of us can approach the student body of any Collage's and get them involved,.this is my point,..Collage kids will always take up the fight for the right cause,.they just need to be informed,.are any of you following this??? please,. what you imply to use has been done before,.people forget very quickly,..how many flayers have people just took off their car,.or in the mail,.just to throw them away without looking at what they are throwing away?? am I making any sense?? ,.please understand we can not do this ourselves,..we need to get folk's outside the morg community to be educated & involved,..I can't say it ant plainer then this. whew,...with care & love,. thank you ;D
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Post by pdidit on Dec 11, 2010 14:36:08 GMT -5
Hi teacherkl I had seen that date discussed several weeks ago, and that sounded good to me. You are suggesting that we compile a general letter that everyone can download ? Also agree with you here in that we probably don't want to shock the public with photos--tis disturbing enough. And the idea would be to send this off to the media or newspapers of their vicinity? Hey I am all for anything getting the word out; in the meantime, am going to try to help Anthill with this thread to made a sister type of thread, pulling data from here to post just the states in groups of locality so people don't have to scroll through messages to see what states have been mentioned. And by compiling states together, others can see where there are other people that live near them and can pm them if they want. The other discussion I have been having with Anthill is to network with the other morgellons site moderators. He is in the process of talking to a few about creating a 'webring', as we speak. This will be helpful to gather more of us together too. So far, how many people do you think know about this Jan 11th date teacherkl? When I first read about this date being picked, I emailed a few people about it and told them to log in on lymebusters to discuss it. I don't think anyone picked this subject back up, even tho I pressed on about it..I really didn't get much of a response back ... I have forgotten now...but where is that discussion now, in the CDC thread? As far as the facebook idea...think this is a GREAT way to reach the masses, but have to admit, I haven't a clue as to how to go about doing this!!! I have logged on there, but really have a blank profile...! then at the time, I couldn't really muster up the energy to be posting on people's walls etc. A few friends said, hey, git your darn picture up there!! yeah, right. I have really had a rough year. But going with your passion on this, could you get more specific and lay it all out for all of us??? I also have a morgellons twitter url, but here again, admit that I am not savvy about this either and didn't follow up on it...a friend set this up for me but essentially have nothing with it; however, agree, it really could be a quicker way to set all this in motion for a more immediate goal. Aside from these ways to get the mass word out, on a smaller scale would be to just go to morgs websites and ask if they would 'sticky' the thread Morgellons Awareness Day". I did this with the States thread, and talked to Morgellons-disease-research and a few others, but then got really sick this past week and it slowed me down a bit. All sounds great, but I think we need someone to head this up...so-o-o, if you are willing and able, just let us know more, OK? Hi itching4answers...looked up stephen taylor and he sounds like a great contact. Maybe he could help us get this going or have ideas for us??? love pdidit
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Post by Harry on Dec 11, 2010 15:58:55 GMT -5
I think Photo's are necessary,.not as a shock value,..but to really help to educate the public,.& what folk's are going through for real ,..a picture is worth it's weight in gold,..the suffering is very real by many,. . you ever see a news program with an abused cat or dog,...folk's are moved by that kind of suffering & understand it better,..think about it,..the news alway shows film or photo's to make a point,.& it works,.... yes pdidt the downloadable petition is a good idea,..anyone with a p.c. can get it no matter where they are. love y'all .Harry .
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Post by ibzahp on Dec 11, 2010 18:15:51 GMT -5
Like the idea of breaking it down into regions. Web ring is great too
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Post by pdidit on Dec 11, 2010 19:49:22 GMT -5
Hi ibzahp
Yes, all good, but will take time so I feel the frustration of others... Thanks for the support...
Hi Harry,
Yes, I see your point and hear you! However, I think perhaps we could do many things, not just one, to get the ball rolling; that said, nothing will be that effective if we don't get a lot of people on board with whatever we decide to do first and agree on a specific date/ time period, how info will be presented etc. Hopefully down the road, these decisions will become more unified.
Here poses a question to all...how can we get many out in force, to connect with College students? Guess we could have a sign up sheet or something, for people who are well enough to be physically active in getting the info out. Others who are not as well, could sign up for something that they feel they could handle with each group performing their own task. I for one, am not physically active enough to get out and petition college students but think it is a good idea and there probably are quite a few who could help in this area.
These are all valid points and ideas to consider... thought twice when you mentioned including photos....the visuals can be very powerful and think you might be right there. But I would think that just the photos of how this effects someone's appearance etc. and not the photos of fibers and oddities that come from this infection. At least this is my first thought...is this what you were thinking??
Anyhoo, let's keep the table open for discussion...everyone has to agree in order for something proactive to happen. Because we all have different, but good ideas on how to get this info out, maybe we should just take each suggestion and do something different each month or quarterly...?
xx pdidit
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Post by Harry on Dec 12, 2010 11:37:07 GMT -5
Hi ibzahp Yes, all good, but will take time so I feel the frustration of others... Thanks for the support... Hi Harry, Yes, I see your point and hear you! However, I think perhaps we could do many things, not just one, to get the ball rolling; that said, nothing will be that effective if we don't get a lot of people on board with whatever we decide to do first and agree on a specific date/ time period, how info will be presented etc. Hopefully down the road, these decisions will become more unified. Here poses a question to all...how can we get many out in force, to connect with College students? Guess we could have a sign up sheet or something, for people who are well enough to be physically active in getting the info out. Others who are not as well, could sign up for something that they feel they could handle with each group performing their own task. I for one, am not physically active enough to get out and petition college students but think it is a good idea and there probably are quite a few who could help in this area. These are all valid points and ideas to consider... thought twice when you mentioned including photos....the visuals can be very powerful and think you might be right there. But I would think that just the photos of how this effects someone's appearance etc. and not the photos of fibers and oddities that come from this infection. At least this is my first thought...is this what you were thinking?? Anyhoo, let's keep the table open for discussion...everyone has to agree in order for something proactive to happen. Because we all have different, but good ideas on how to get this info out, maybe we should just take each suggestion and do something different each month or quarterly...? xx pdidit your on the right path I feel pdidit,..and yes photo's w/simple lesions would work well I think,..when I was in the Army,.my drill sgt. drove this into all of our heads,.& it makes prefect sense,..it was called Kiss,.keep it simple stupid,...if even in the petition we make mention of fibbers an the oddities,.it would be hard for someone that doesn't have this Disease to wrap their mind around,.and might think ya!,. you folk's are nuts!!,...so I totally agree pdidit. hugs to all
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Post by ANTHILL on Dec 12, 2010 11:45:49 GMT -5
Hi everyone At the moment I have made up a sub board in the "What can you do section" of the board and am in the process of transferring the user names and locations from this thread to there so it is more organized it easier to get the information It is not accessible at the moment and will be available only to viewing by members once it is made available for now~ We may decide to open some threads for discussion at a later date Just thought I would let you know that we intend to run with this as far as we can take it to get what we want and not let it die thanks for your participation everyone
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Post by teacherkl on Dec 12, 2010 13:49:43 GMT -5
That's great Anthill!!! As far as me organizing some type of group in MA, I am more than willing to....and I'm also willing to help set up some type of facebook event as well.....However right now I have a lot of time constraints. I'm attending grad school and working full time as a 5th grade teacher. The summer should be a lot easier for me to contribute as much as I can....hopefully I'll still be healthy then. For now, all I can do is offer some ideas!!
Peace! And continue to spread the word about 1/11/11.
teacherkl
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Post by bannanny on Dec 12, 2010 14:44:47 GMT -5
Great site Harry... love the pins!!! I think compiling a general letter that all of us can download is a great way to go... but I really think the media has to be bombarded with this all on one given day. 1-11-11 stands out too... and why I think that's what we need to shoot for. All we have to do is get the letter written (yours was very good, simple, and to the point too teach) and send it via email to every media link out there, including newspapers. It has to be done on a large scale tho for them to take notice... yet it wouldn't be that hard for us to do at all. Everyone in every state who's posted here can simply send the letter to any and every media outlet you can find in your area... and if we all do it at the same time, we may get some attention. At the least it might be on our local news stations that thousands of letters all pertaining to morgellons disease were mass mailed on that day. Great to also flood facebook/twitter with it as well. Anyway, we'll never know what it might bring if we don't try... so let's get some letter writing together and try to come up with a final product we can all use. I tend to get too involved when I start writing about it... but I'll try my best to come up with something simple, yet to the point. Something like... Today has been named Morgellons Awareness Day by all of us suffering worldwide. Morgellons is a disease we must draw more attention to... since we've been fighting so very hard for just that and have still received no help at all. The CDC has delayed the report of their Morgellons study once again, which is now in the hands of the US Armed Forces Division of Pathology. That alone should be a warning to you all that this is a huge concern and a risk to you and your loved ones health. We're still suffering and many have died. We need your help in finding the answers we've so desperately been seeking for too long now. So pay attention to this disease, and do it now... before you find yourselves living this nightmare as well....or something like that. I'm pretty brain fogged so I'm finding it very hard to get the words out. But if anyone wants to take anything of what I said and make it sound better, go for it! We just need it to be simple, and most importantly... from the heart. I don't think we need to worry about pics right now tho... they can come when we do this a second time. Thanks so much for all your help too Ant... you're the best administrator anyone could ever hope to have on a forum!!! You look so handsome in your Santa outfit too! love ya's ~~ bannanny
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Post by pdidit on Dec 13, 2010 21:15:04 GMT -5
Oh Bannanny...sounds good and especially like part of telling people the study was turned over to the US Armed forces...that should send a red flag to everyone!
xx Pdidit
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Post by sheredelight on Dec 14, 2010 3:08:18 GMT -5
I come from a land down under.....Australia....Queensland....
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Post by bannanny on Dec 14, 2010 16:23:20 GMT -5
I thought so too pdidit... and it's true!!
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Post by itchin4answers on Dec 14, 2010 16:33:33 GMT -5
Hi pdidit, Stephen Taylor of 60 Minutes knows quite a lot about Morgellons already. He & a reporter (Tara Brown) visited the states last year & recorded part of a story. The plan was to complete the rest of the story here in Australia & go to air this year, 2010. Unfortunately that never happen. I think 60 Minutes got cold feet, they said they wanted to wait for a pronouncement from the CDC. I have kept in touch with them, asking them ever so nicely if they could please consider airing the story next year, 2011. Maybe it wouldn't hurt for people from other countries to perhaps write to Stephen? This is his email address anyway; sttaylor@nine.com.au
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Post by itchin4answers on Dec 14, 2010 18:01:28 GMT -5
Hi sheredelight, only just noticed your post! I'm in Melbourne, Victoria. I know many others with Morgellons all over the country. How about yourself, do you know many others?
Nice to meet you, I love Queensland, great part of the country!
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Post by morgellonsmoe1 on Dec 14, 2010 22:29:39 GMT -5
Myrtle beach area of South Carolina ( Im in the farm part of the county not the beachy part)
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Post by bannanny on Dec 15, 2010 11:31:38 GMT -5
I just sent him an email itchin... asking to please continue their reporting on morgs since we're all suffering so. I also added that it needs to be brought to the forefront of news. I think we should all do the same to get their attention!!
Thanks...
hugs ~~ bannanny
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Post by ANTHILL on Dec 15, 2010 13:24:11 GMT -5
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Post by pdidit on Dec 17, 2010 11:08:42 GMT -5
Hi itching4answers!
It's great to see that you have found someone 'down under' that you can connect with! I will do the same as Anthill and contact this reporter in hopes to make a connection. Thank you so much for contributing such a great resource to further our cause!!!
And also a big thanks to Anthill...as was discussed, I will help you add to the new permanent data link when I see some newbie has come forward with their state... Great job!
Love Pdidit
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