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Post by toni on Jul 10, 2007 16:53:17 GMT -5
Oh.....I can hardly type...I'm soooooo thrillled....ahhahahahahahahhahahahaha
okay...Anyone live near or in Orlando Fl???
Channel 9 WFTV wants an interview!
PLEASE PM me ASAP!!
THANK YOU ALL!
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Post by Sidney on Jul 10, 2007 18:44:13 GMT -5
Bump.
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Post by liz on Jul 10, 2007 18:45:47 GMT -5
WOULD THEY TALK TO ANYONE VIA SATTELIGHT PHONE ACROSS THE COUNTRY..I WILL DO THAT AND IT MIGHT BE GOOD TO SHOW THEM THIS IS NOT JUST IN FLORIDA...I AM GOING TO CALL LAUREL PORTER KGW CHANNEL 8 PORTLAND BACK AGAIN AND I THINK I MUST RECONSIDER!
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Post by toni on Jul 10, 2007 20:11:51 GMT -5
Lizard, Thank you for the offer, if that were possible, oh...I'd be talking with them and telling them EVERYTHING. I'm not shy. But they need people (real live people), because I'd told them "WE Morgies" are in each and every state in the USA...but... Idea, you could do that on radio stations "yeah" I mean we need it from all avenues, and TV is the biggest exposure, so I hope we can find someone to do this.
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josej
Full Member
Posts: 140
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Post by josej on Jul 11, 2007 14:54:19 GMT -5
Well.... my wife and I would be willing to do the 5 hour schlep from Miami to Orlando if that station wants to interview us. But, I do have a problem with that. If no one else responds... and me and KJ (Kathy) have our mugs on TV again... it's going to appear as if we are the only people in Florida with Morgellons. AHHHCCH!!!! Obviously that's a crock. So, where's everyone else on this board who lives in the Sunshiny State? Here's another problem: If nobody responds, the TV station is going to arrive at the logical conclusion that there are no Morgellons sufferers in Florida..... or that Morgellons people aren't really interested in telling their story. That's another crock. At least from a superficial reading of this board, I come away feeling that we all want our voices heard. Well, here's your chance. This could be your chance of a lifetime. And frankly, you're needed. We need you. My wife needs you. I need you. Please respond ok? If we're willing to do it (and trust me we're not media hogs) then will you consider it too? I kinda feel bad for toni who's busting her little tush writing letters and contacting reporters.... and for what (?) if nobody's interested? She's too classy to mention it. But I know she's feeling a little discouraged with all of this. I'm only a newby here, but y'all know how hard she works on our behalf. Let's support her efforts. Hey this was my first rant!!! Now I feel much better.
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Post by Sidney on Jul 11, 2007 15:28:28 GMT -5
In complete agreement with Jose (and Kathy) and wonder where you Floridians are hanging out?
This is your big opportunity to tell your story, to be seen and heard and what you do for yourself you do for each of us regardless of our home state.
Please don't pass up this opportunity.
Tonisue spends every day of her life a virtual prisoner in her own home due to this disease.
Stuck there daily, leaving only for an occasional medical appointment, writing letters, making phone calls, and holding lots of hands of fellow sufferers.
Let's show some appreciation. I sure don't want her to give up on us!
I know many of you give freely of your time and you are all very appreciated, but for the life of me I simply can't understand why people in Florida aren't jumping at the opportunity to spread the word.
Please help!
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Post by Sidney on Jul 12, 2007 13:33:41 GMT -5
Just curious regarding the consistent message and the media packet.
Do you have access to this information?
In my opinion, there's plenty of "wild" opinions regarding the disease/syndrome/condition that can and will do us much more harm than good, and I certainly haven't seen any of that in media coverage provided by Ken Cowles.
The recent disclosure of 60,000 persons reporting this disease is an excellent example. That number did not originate with the MRF or Ken Cowles, and there is absolutely no solid evidence to support it.
If there's evidence to support this claim then I challenge the perpetrators of this myth to make that information available immediately.
Scare tactics along with Sabre Rattling, threats of Weapons of Mass Destruction, etc., may serve a purpose, but for the most part it's all "white noise" and falls on deaf ears.
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Post by toni on Jul 12, 2007 13:47:48 GMT -5
Pez,
Nothing against Ken Cowles, but last year I did more letter writing than you have any idea of. And I'd written to Ken numerous times (I NEEDED HIS ADVICE and HELP)...AND GOT NOT ONE SINGLE REPLY. NADA,ZERO
So is he only around when (after) I've got the platter filled? No thanks.
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Post by westside on Jul 12, 2007 14:12:07 GMT -5
I am here in NYC. Last June "justhangin" and i were interviewed on a local newscast(WB11). It was Mary L. that called me and asked if i would do it. Perhaps Mary can use MRF records to alert Orlando (and surrounding area) sufferers that troops are needed! Thank you to all who work so hard on all of our behalf,especially Toni and Pez. I don't know how you manage. Between the brain fog,fatigue,the daily battle waged,feeling so fearful and defeated it's all i can do to keep working my job! I admire you both so much and am so grateful for your efforts!
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Post by toni on Jul 12, 2007 14:19:14 GMT -5
Pez, you have a PM.
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Post by Administration on Jul 12, 2007 14:39:39 GMT -5
In my opinion, there's plenty of "wild" opinions regarding the disease/syndrome/condition that can and will do us much more harm than good, and I certainly haven't seen any of that in media coverage provided by Ken Cowles. The recent disclosure of 60,000 persons reporting this disease is an excellent example. That number did not originate with the MRF or Ken Cowles, and there is absolutely no solid evidence to support it. That's so true and it's generally the fault of the reporter not doing his/her homework when these figures are mentioned. They do a story based on older interviews and articles whose facts and figures are now outdated. These types of articles aren't even checked for evidence of facts, nor is Ken Cowles contacted prior to them coming out in print. I've seen dozens of Morgellons websites popping up and either they have inaccurate info from the get-go or they don't update their original copy as the disease progesses in numbers. It's too bad for us because the true numbers are increasing everyday and the people who read those articles and websites are mislead. Thank you for your efforts Westside, both last year with the interview and now for your suggestion. You're right, Mary would have the same list that Ken has where Florida registrants are concerned. I imagine the only reason it was suggested to involve Ken to begin with is because nobody from Florida seems to be volunteering to help Toni and be interviewed. Perhaps they all haven't seen this yet or maybe they are camera shy but I do hope that some will reconsider. Everyone here is working so hard to get things accomplished and we are really grateful for all of your combined efforts. As we all know, it's the only way we are going to forge ahead and garner the results we need. Unfortunately, I don't see a handsome knight on a white horse coming to our rescue anytime soon, so thanks again to all!
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Post by cindycasey on Jul 12, 2007 14:43:35 GMT -5
Westside,
Was that the same NY story where Ken Cowles was actually interviewed? Or was that another NY story when he said "NO DNA" ? I'll see if the link is still live on thhe website.
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Post by chelsea on Jul 12, 2007 16:43:54 GMT -5
wounded nurse Casey writes:
Or was that another NY story when he said "NO DNA" ? I'll see if the link is still live on thhe website.
Summer reruns of the dog and pony show already ? Before you find yourself resorting to such dribble again I suggest the following. As you saddle up the key board ask yourself WOULD WYMORE WRITE THIS ?? WWWT for future reference. You have begun to hurt him by association.
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Post by prevenge on Jul 12, 2007 17:06:24 GMT -5
i caught this in orlando when i lived there for 2 years, but am in NC now.
feeling of webbing on my body, red dots on skin, bugbites with no bug on biceps, feeling of things jumping "FROM" me (eyelashes etc).. tons of tiny bites around ankles where i wore socks.., bathroom floor covered with blue fibers, beginning of fatigue... small rash on upper thigh.. "stinging" from wherever you sweat from, when you just begin to sweat... aching in bottom of spine, joints... chest stiffness.. the beginnings of very prominent angry outbursts that were not like me to have.
all blew off as just "not living heathily"...smoking etc...
didnt realize that i actually HAD this .. till living in NC for about a year.
didnt come to my attention till my huge ear inflammation and the CRAWLING that spread out from it. it does not stop. once the crawling began... only then did i realize i found out i had this.
that all started back in Orlando though.
Tonie.. what do you suggest I do to get involved?
-M
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Post by toni on Jul 12, 2007 18:17:31 GMT -5
Prevenge,
I'm so sorry, I know, this is beyond words to describe really. And thank you dearly for your offer.
Pez has some excellent letters that you can sign even just sign your first name to...and every single day, send 2 or 3 different letters, continually, until they DO answer with a reply.
Politicians or their staff do not reply UNLESS we are constant and consistent. Then we are truly demanding to be answered.
That will help greatly.
That would be great if you could do that.
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Post by ppy18 on Jul 12, 2007 18:23:10 GMT -5
chelsea, are you going to bitch slap cindy every time she post. if so maybe you can enlighten me to the reason she is "wounded nurse casey". did you shoot her? and what sort of dog and pony show is she having? is it sorta like a circus or is it like one of those really gross porno flicks that have mr ed in a starring role? quite frankly, if that is the case someone should tell lassie to tuck tail and run for the hills. so which is chelsea? i guess either way you look at it , cindy is just one sick puppy bad cindy, no kibbles and absolutely no bits.
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Post by Carrie♥ on Jul 12, 2007 18:45:15 GMT -5
Kelly...you're such a beotch. I love you beotch! Stay out of other people's drama girl...we all see what's going on. You've got enough issues but I am crackin' up because you are so damn funny and I love you. Did you finally awaken from your coma? I've been wondering what happened to you...sleeping beauty. I'll fix the pics soon my friend...I'm off to the poolside!
Toni...have you asked Randy? Email him directly. He should be able to put you in contact with some folks in Florida or maybe his assistant...at least I think. I'd email him directly and Cc morgellons@osu.edu. If you don't have his email address let me know and if you want me to ask him let me know that too. I don't want to jump in on your parade. I agree with Jose...you're fantastic ball of p@ss 'n' vinegar and I love it.
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Post by Administration on Jul 12, 2007 19:34:14 GMT -5
I said we're not having this and I meant it. I will not lock this thread that Toni started from much hard work and those of you who are questioning ANY efforts of ANYONE on behalf of helping all of us Morgellons sufferers should be ashamed of yourselves. We've tried to be nice and work with you but that just isn't enough is it? It really saddens me that personal egos are more important than answers to curing (or at least treating) this horrible disease.
Cindy, you were around last year during that interview and you know exactly which one it was. Why do you continually feel the need to derail every effort here to make progress? These conversations should actually be on a personal basis between you and the Admins here but since you seem to want the attention, I will respond to you openly.
We have always graciously allowed you to post any information you desired, even when some links led to unsavory comments about this very forum to which you've always been welcomed. Many times we felt you went a little too far in pushing buttons as well as boundries but we continued to retain your membership because we felt you wanted the same results that we did.
It is very clear that your foremost intent last night was not to release new info about OSU - you most definitely would have started a new thread for such a priority if that was the case. Clearly you feel this is some sort of competition and we will not allow you to use this forum again for whatever personal vendetta is driving you this time. This is not a game! We are sick, we're desperate for answers no matter who has them, and we don't have time for these petty distractions.
If you people cannot conduct yourselves as adults and respect the hard work being done here, then we don't need you. People's lives are at stake and that includes many children as well as all of us and our loved ones. There is no room for egos or competition and if that is your sole agenda, C'Est La Vie and so long. We will make progress with or without you, it's your choice. We are not so out of the loop or naive as to not know what is going on here, given the time frame of specific, recent posts.
Toni made this thread about recruiting volunteers to help all of us and there is no room for inuendo here, only those who are actually trying to make a difference. Toni, I'm really sorry for these distractions and I promise you, they will stop one way or another.
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Post by toni on Jul 12, 2007 20:13:20 GMT -5
Thanks Carrie!
The news guy has his number, haha sounds funny, but he does. He told me yesterday he's almost done with another story, then WE're (Morgellons) is next! As I learn I'll let you know what's what.
On "the other subject"...on the other page, the one that's seeming to get out of control, I can only hope we don't do that, because then we go no where.
And that is because what might appear on the surface (posts) isn't necessarily all there is. I sounded sort of nasty in regards to Ken and I shouldn't have, and I did only because it was reflective of a private conversation that I allowed to get the best of me. Excuse me for venting part of that conversation openly.
I don't know Ken but I'm sure is a wonderful person, or I'd like to think so, bottom line, anyone willing to help with this Morgellons is wonderful in my book, but I don't want just one avenue or it becoming 'generic'...we need real people to express what this is doing to them, and how it's very much appearing to be spreading and how badly we all "the public" too needs help.
I only took on "contacting the news" so we'd have (another avenue). So if that gets funneled into one, we are then back with "not enough exposure" as we were. The more people that can do this, the more exposure, and the faster the name of Morgellons gets out there.
And I'm trying to think how to say this where everyone who doesn't understand this will understand, without going into things that don't need going into.
If many people for instance are getting news people all over willing to do stories, that beats the heck out of "one" person doing it. That's all I'm trying to do is be one of (many). Just to be another source in "getting that lined up". Like a company has many distributors, and if we can be those distributors of information the word not only gets out there faster, but then we can cover more territory too.
If ten of us had "projects" I'll call this, we'd be hoppin!
By the end of a month or two, can you imagine how many news stories would be in people's homes??
That's what "I personally feel" is our answer, and I'm sorry if someone doesn't agree, but unless Morgellons name and what it does to a LIFE a HUMAN'S LIFE - unless this becomes as commonly known as a 7-11 store...we're going to live with this longer.
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Post by toni on Jul 12, 2007 20:19:42 GMT -5
Admin,
I must of been typing my last post there while you were posting. Thank you...
Yep, we need to get back to the tv stations.
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