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Post by ppy18 on Sept 6, 2007 20:35:38 GMT -5
someone mentioned the idea of putting together a book about the suffering that we have experienced as morgies. actually the book would write itself for the most part as the idea is to write a chapter bout what morgellons is and what little has been done to this point in helping us regain our health. that would be followed by pages and pages of personal letters from morgellons victims to health care professionals, scientist, HMO's, gov't agencies,etc. many of us have written heartwrenching letters already. we could include the petition and the pleas for help contained in it. basically the book has been written already. the plan is to self publish as many copies as we can fund and send them out to senators,media, or anyone we can think of that would help. we would like to include a copy of the finished documentary that microdot is working on with each book we send out. the person that will be putting this together and writing the forward/intro chapter wishes to remain anonamous at this time but reads this board daily so address any questions or comments you have to this thread not my PM cause i ain't in charge i can't even organize my closet right now. so lets hear it people.........what say you. damn thats bill o reilly isn't it? sorry in light of recent events i would like to suggest that this book be dedicated to chas to honor his memory and help continue his fight. we can't let him down y'all. he dedicated his life to us, now it's our turn to give some of that love back to him. we owe him and cindy that much
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josej
Full Member
Posts: 140
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Post by josej on Sept 6, 2007 21:29:20 GMT -5
Kelly, I like your book idea. Another idea we've been rolling around is to write a very short pamphlet. Something that can be printed on a letter-size paper (both sides) and with a three-fold. Anyway, what we wanted to do was put together a pamphlet that is eye-catchy, shocking, attention-getting, and informational about Morgellons/Infestation. Our plan would be to stand in front of a large store and pass them out to people as the go shopping. I guess we'd do that until they chased us off. Then we simply move to another location. Can you imagine a typical "soccer mom" reading this and going home screaming to check on her little Johnny and Suzie? The idea is to let the general public know about this. I know 99.9% of Americans have never heard of Morgellons or anything like that. At least we'd get the word out... educate people.. maybe scare them a little (nothing wrong with that because this is darn scary). But the pamphlet has to be put together with the highest professional ethics, and of course, has to be very artistic too. So, that's what we want to do. Just wanted to share our thoughts with the LB community. And if anyone has already put something like this together, maybe they could share with us.
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Post by skytroll on Sept 6, 2007 21:32:52 GMT -5
Been saying that for a long time PPY, glad someone is doing it. Yes, microdot's documentary out the same time. What do you need help with?
Skytroll
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Post by skytroll on Sept 6, 2007 21:40:50 GMT -5
Like that idea too Josef,
We did try that too, but, it got squashed. Keep at it. I can type and print and fold.
Am a writer, of sorts, researcher mostly, but have worked in a bindery and can fold. So, willing to help anyway I can.
Either one of you, let me know what you need.
I am tired of looking for this, but, if we have a book out there, making peole more aware of it, then, we've gotten past the first stage, Awareness! I started one on Biology-on-line and it hit the bucket. Too many people stealing the stuff. Ridiculous.
This is about a community that suffers from something that medical professionals are ignoring. All this secret stuff is a bunch of crap.
Thanks, both of you for all you do.
There are some artists among us, come forth! ha ha.....
No, seriously professionally made, is what we need. I can edit, too.
Skytroll
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Post by suebe on Sept 6, 2007 23:15:00 GMT -5
Well I sure can't help with any art, no good here, but I sure could go to office supply store and get lots of pamphlet paper and ship it to whoever is doing it. So keep me in mind, I'd like to do that. Love ya's
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Post by liz on Sept 7, 2007 0:21:07 GMT -5
What a great idea Kelly.... but it makes me so mad we have to even go to these lengths...to get someones attention....hell,,,I'll camp naked on the White house lawn if thats what it takes...then they can take a good look at some lesions....that was a non partison comment...It's just a"WE ARE SO DESPERATE " comment....
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Post by liz on Sept 7, 2007 0:22:36 GMT -5
Probably not a good idea of mine above... with our DOP diagnosis and all...will stick to the books and pamplets for now.....
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Post by bugsy on Sept 7, 2007 6:03:02 GMT -5
Ppy great idea. Certainly enough information out there. Daunting. Perhaps overwhelming. Write what you know. hee hee. The only book I would select from the shelf at this point regarding Morgellons I think would be a deeply honest and personal one. Everyday now since I contracted this stuff there has been an overwhelming onslaught of speculation over what the cause and what helps. (WHICH I HAVE DEEPLY APPRECIATED BY THE WAY!!!) Butt the only thing that will forever be a constant and unchanged EVEN AFTER A CURE..is our personal stories. Yep, I said it. The only historical perspective which holds any water in my mind is a personal account. This will remain the same and it doesn't matter if your story become antiquated with time because it is your story. Anne Frank & Christopher Reeves "Still Me" as an example. Timeless. Things will change with this disease at lightning speed (hopefully) when the CDC starts moving. I want to know how others have coped with this from behind the scenes from all imaginable perpectives. How it's affected them personally. That is the book I would select. But that is just me. And yes I just started a paragraph with But and And. hahahaha Good luck with whatever approach you use. ~Bugsy
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Post by morgellonsmoe on Sept 7, 2007 6:18:43 GMT -5
I have a book of my story just need a release and Ill send it too you. I think we all have our own stories and put them together with roaltiy aggreements and we have a best collection PS was curious now that the CDC has taken DOP off its web site, can we somehow get a lawyer perhaps a big wig to sue the CDC for the harm that DOP being the only thing on there for years? any ideas?
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Post by skinmystic on Sept 7, 2007 11:28:05 GMT -5
I wrote a pretty stinging (!!!) description of this which I sent to the CDC and posted here about a year ago. Are the archives here dumped at a certain point? The only other way I could find it would be difficult. I think it'd be worth including.
Excellent, excellent idea.
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Post by skinmystic on Sept 7, 2007 11:28:43 GMT -5
who is chas?
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Post by belikewater on Sept 7, 2007 12:36:50 GMT -5
I believe info. on the board is copywrited. Please ask permission before you use individual's postings.
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Post by Administration on Sept 7, 2007 12:42:37 GMT -5
Pez1103 has a pamphlet available by request. You can find her post here: lymebusters.proboards39.com/index.cgi?action=display&board=rash&thread=1189177288&page=1#1189177288I wrote a pretty stinging (!!!) description of this which I sent to the CDC and posted here about a year ago. Are the archives here dumped at a certain point?......... Karen, the archives from a year ago are definitely still available and you can find them by searching all your own posts - this is explained in our Message Board Tips section: lymebusters.proboards39.com/index.cgi?board=tips&action=display&thread=1186502594How To Find All Posts By A Specific Member Click on their Username and you will be taken to their personal Profile. Scroll down and you will see their previous messages displayed - the default option is 10 but you can backspace over that and enter as many as you like, on up to the total amount of messages this person has posted so far. Click on Submit and wait for the page to load with all of their messages lined up. ~~~~~~~~~~~~~~~ If you know about when you posted something, you can scroll through your posts from the top or bottom, whichever would get you to that time period quicker. I might have some extra time later and will help try to find what you're looking for.
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Post by ppy18 on Sept 7, 2007 13:19:40 GMT -5
no ones writings would be included unless they submit them for the book. in fact we are actually thinking of asking individuals to hand write them for submission and possibly publishing them in as a photocopy in the writers original handwriting. not sure about that yet. still being considered by anonamous
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Post by bugsy on Sept 8, 2007 11:51:07 GMT -5
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Post by felixwillford on Sept 9, 2007 5:26:45 GMT -5
I have been slowly working on writing an article to submit it to Woman's DAy, or those other magazines. I wanted to focus on the hardship, losses, fear, and all the chaos this disease has caused. Those magazines often have "real life story articles". It too would "ALERT" or as JOSE says "SCARE" the public.
Aid frightened everybody
Kelly, This book with all our stories is a Fantastic idea and perhaps we could use any profits for RESEARCH FOR A CURE or an INVESTIGATION INTO ..... ............... WHY WE GOT THIS in the first place and who is responsible for our misery.
Jose, Yes, we could stand outside Infectious Disease MD offices and pass out the pamphlets................. and dermatologist offices too!
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Post by godog on Sept 9, 2007 8:45:01 GMT -5
I think hand writing something really adds a personal touch, a touch of truth. That the sufferer is a real, live, breathing human being. I hand wrote my letter the ones that oversee CDC, the Pez asked us to write to. So they know that it is an individual, not just one person sending a bunch of copies or whatever.
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Post by ppy18 on Sept 13, 2007 1:38:49 GMT -5
ok here we go. what i am looking for here is letters to medical professionals, govt agencies,researchers, etc... that are pleading for help. i don't want angry stuff. looking for letters that will show people that average tax paying citizens are sick and desperate for help. how our govt has let us down by not stepping up to help. we want to show that this could happen to anyone and that they could be in our shoes right now. we want to change the way these situations are handled and we demand accountability by those responsible for allowing this to become the travesty that it is. please send hand written copies of letters that you wish to submit to my address. PM me for it if you don't mind. ideally we would like to get letters that date as far back as when this was known as elliotts disease to present day. any that submit letters please specify if you would be willing to have your picture appear with your letter.
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