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Post by JLR on Jun 9, 2005 10:34:59 GMT -5
I think we all would agree that exposing Morgellons to the uninformed public would be the best thing we could all do. I have noticed a pattern with everyone thinking they would at first be infested with lice or scabies using over-the-counter permethrin creams and household sprays (RID, Nix, etc.). Would there be any legal issues with secretly slipping in a small pamphlet/flyer/computer printout sticker to these products in all local stores; directing people to the morgellons website if they can’t get rid what they are feeling? This would inform people in your areas that are clueless as too whats goin on with themselves. Just a thought. Sounds kind of guerilla tactical, but something has to be done. I won't try it until I get a response on what others think.
JLR
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Post by Patti on Jun 9, 2005 10:58:53 GMT -5
Sounds like a good idea, JLR, and I'm not sure about the legal issues either....we wouldn't want anyone to come back on Mary but I wish there was a way we could warn others about this.
Actually, I know that many of us seemed to get worse after using these products....not sure of the connection but there is a large enough group of us where this happened that it has to make you wonder.
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Post by bb on Jun 9, 2005 11:48:32 GMT -5
The permethrin cream was hell. I could feel them 20 times more. They just crawled around it the medication.
At first when my husband sprayed our house with chemical they crawled up my legs more. They didn't like their environment and had to get to safety, I guess.
It sure would have been nice to be spared a lot of the early mistakes, and the hopelessness created by the lack of concern from doctors.
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Post by Big Mike on Jun 9, 2005 20:33:16 GMT -5
I think the insecticidal creams drive them out of the skin (temporarily), where we first become aware of them, and force them deep into the body. When I used it I could see several things (different species?) backing out of my skin at various locations on my face. Just my opinion on but one of many facets of this multifaceted conditions.
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Post by 5piderlegs on Jun 9, 2005 22:07:35 GMT -5
There is already a delusional stigma associated with Morgellons. Randomly slapping stickers on different products would appear to further that notion. Contacting your local health department and inquiring if there have been many reports of "scabies that won't respond to treatment" and then informing them of the possible reason why has seemed to work for us locally. There has been a rather large number of scabies cases reported locally and the health department here is concerned.
That's just my opinion. I DO think it's important to get it out there and noticed.
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wally
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Post by wally on Jun 10, 2005 11:38:51 GMT -5
I think that would be an extremely bad idea. It wouldn't help our situation and would get us further branded as a bunch of kooks. Also, it is not the pharmaceutical companies fault that we are in this predicament. It is the fault of the dermafraudulists and there ilk that have put us in this situation. Direct your anger at them, not the pharmaceutical companies. Putting a pamplet or other device could be construed as product tampering which could get someone in a lot of trouble. We sure don't need any legal problems on top of everything else we have going on. Forge On.....Wally
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Post by JLR on Jun 10, 2005 12:42:37 GMT -5
Havent done anything, I just thought of the people suffering wondering what the hells going on possibly posioning there bodies over and over hoping the next time will work (you know the non techies, I'm sure they out number the few of us) I'm about saving the people than bringing down the man, was not directed at the companies. I was really only thinking of something like. [can't make it stop? http://www.moregellons.org] I've noticed while I was doing the same, that alot of these products were out, made me wonder if anyone else was going through this.
but yea, i can see how product tampering would be illegal.
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Post by spiderlegs on Jun 11, 2005 11:37:12 GMT -5
Wally makes an excellent point. There is no point in burying yourself or "the cause" any further by doing something that could be construed as an act of terrorism (which if you've read the Patriot Act, product tampering falls under its vague and amorphous shadow of "things which could get you in a heap of trouble"). There are other ways of getting it out in the open, though we can mark 'featured article in Popular Mechanics' off any future lists...
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faith
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Post by faith on Jun 11, 2005 14:43:49 GMT -5
I realize we have all been victims of this illness then to add insult to injury the so call experts compound the problem. However: One of the only rays of hope I have is knowing there are others with this. Please listen.......think about what I am saying......
List your symptoms.... List how many doctors you have told... List their reactions.... List how many appts and phone calls you made to each doctor... List how many products you have bought for this..... List how many medications..... List what all you have done to your home.....your personal belongings...your auto.... List all the various reactions from friends, family, co-workers.... List your own mixed feeling....... List your own family's mixed feelings.....
Okay....after I did all that, I indeed felt crazy.....I really did.....BUT I AM NOT!
Here's my point. Our power is like this illness. IT is in the numbers!!!!!!
The only way, I really believe this guys.....is for everybody to become willing to look crazy and be judged so (as we already have in our inner circles).
We are from all over the united states. We have all different back grounds and to explain so many symptoms the same. This is real. Nobody could possibly make up this stuff. To many exact symptoms. No way for all of us to come up with without having experienced it. I am not saying I know how to go about this....I just know I need you for strength and that is how we will uncover this and get the attention we need to save ourselves.
Please forgive me for getting a little carried away for the moment.
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Post by Lisa on Jun 11, 2005 17:39:17 GMT -5
I don't think you got carried away at all. What you said is so true. In my opinion, what makes this so legitimate is the fact there are so many from all over the world, experiencing the exact same thing. People have shared photos of the stuff that's come from their skin and so much of it is similar. The really mind boggling thing to me is, the multitude of doctors whose reactions were identical. I think we all share this in common too ---- (which has been called a feeding off of one another, or a form of DOP..... something to that effect) we started getting symptoms that no one in the medical field could help us with and we started doing our own research. What did we find? That there are a whole lot of others suffering with the same symptoms and they formed a support group and a functioning Foundation.
It used to come up every once in a while that we should picket outside the white house or the CDC. Get the media's attention and have them there. At first I thought, "yeah right, that could never happen", but now that it has crossed my mind again, it may be not such a bad idea after all. I would find a way to show up.
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Post by bb on Jun 11, 2005 20:03:05 GMT -5
Let's do it.
I still think we ought to get naked.
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Post by SpecueLatin on Jun 12, 2005 0:24:49 GMT -5
Just want more traffic to the website? Try this: Spark curiosity. Explain nothing. Cover a sheet of paper with the words: www.morgellons.orgnow cut the paper up, line by line.. leave these tiny scraps anywhere and everywhere.. for instance on tables and public libraries, community colleges, waiting areas, lobbies Trust me.. the nosy will come to visit. Spec
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Post by zaneybrainy on Jun 12, 2005 8:20:17 GMT -5
8-)all sounds great!!! placing EYE CATCHING/INFORMATIONAL flyers is the only way to educate others, etc...
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Post by Orion*** on Jun 13, 2005 0:22:51 GMT -5
The problem with this whole thing is that I don't believe that morgellons is the right name--It is morgellon like but not like the old morgellons. This error could throw some curved into the information and misslead others. I noticed that Cliff Mickelson dropped the term morgellons and chose to call it "cotton fibe disease" Me also--I kind of choak on the morgellons word. You can not think in two directions at the same time and draw positive conclusions. It is in my opinion GM. The bacteria is a modifyed Bt therungis sp.The black thread or worm is a nematode of sorts. It could be GM also.
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Post by justice on Jun 13, 2005 0:40:32 GMT -5
Hello! I'm new to actually posting, but have been reading yours since February. I was listening to Coast to Coast one evening and a woman from Gig Harbor called in about "the mysterious skin disease." I went directly to the Morgellons website and what do you know~ my personal nightmare, vindicated. I knew I wasn't insane, but getting closer every day if someone (other than my mom and my best friend) didn't believe me soon, I really was going to lose it. I have thought long and hard about the ways in which to best alert the public about this~ since our "care providers" have done such an amazing job providing care and my Senator (who refuses to answer any of the three emails I've sent him) is really addressing the needs of the people, I believe that Speculatin is on to something with the mysterious paper slip simply stating the morgellons web address. I think its brilliant! I think we should set a date that they should be released simultaneously. I have a friend who's a helicopter pilot (haven't discussed this with him yet, but he's a good person) perhaps we could not only place these ourselves in various locations, but really get the word out. Doesn't the US military drop propaganda leaflets above whatever country we're currently invading? Just a thought. By the way, I've been suffering with the symptoms of this disease for around 8 years, perhaps longer. I live in Portland, Oregon. I don't have health insurance and was so dissenchanted with my experiences seeking medical attention for this, wonder if I will ever return. I have not been tested for Lyme disease, but appear to have the symptoms. I just can't face that humiliation ever again. What an awakening experience this disease has been: Everything reveals its true colors and What is, is suddenly not What is not, now is. Please continue to mill over more ideas. I think this ball will continue to roll right up to the steps of the AMA
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Post by ebgbgms on Jun 13, 2005 2:10:26 GMT -5
Orion, where is Cliff? searched everwhere, wonder why he doesnt visit the board. we cant help the name, its what was best at that time do to knowalge know at the time. using two would confuse. believe me the name sucks, but whatever it is called it will always suck. im on a campus and will plant something simple i can come up with, like adapted said they will check it out, if i do it at the begining of the wk. ha they will. I wish a smart doc who wants to help and be remembered in history will hurry up and figure this out then its his name! friends to u all G
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faith
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Post by faith on Jun 13, 2005 13:27:39 GMT -5
I have to agree with Orion...the name.....morgellons....just does not do it for me....but do you think a change would ever really be pulled off? Would it be a waste of energy trying to change it at this point in time....or do you think its worth the effort? I will do what I can, what ever it's name is.....I just want rid of IT. Whats the input on this ??
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Post by SpecueLatin on Jun 13, 2005 15:24:21 GMT -5
Hello Justice,
Thank you for the compliment, the brillance really belongs to my son who first thought of listing a website address only on a scrap.. for another endeavor we almost embarked on.
Good idea to make a date so the results of the effort could be tracked. A week long period would be good because then the MRF could see by the number of visitors and new guests if this inexpensive method of getting the word out would grow the numbers.
We could do a wave now, but do another wave in the fall when people are back in school.
Setting a date and seeing a result would make the members here feel like this effort is worthwhile, otherwise the plan might peter out.. everyone feeling like it was just futile.
Fearless leaders give the word.. post us a page in 14 point bold and we will be snipping it to pieces shortly.
spec
ps.. ABOUT the morgellons terminology.. this is the way I understand it: It has historical significance (to the creation of the MRF); it also has legal (non-profit designation) and marketing/recognition features that we need to continue to foster. At first though, I felt the same way.
From the legal aspect, MRF has applied and received the non-profit designation using this name, and it is gaining recognition. I understand the sort of mental conflict it creates if you focus on the old morgellons only. Think of it as a springboard. It helped fuel Mary's endeavor to help her son when she found out this morgellons disease once existed, so even if none of us have the old morgellons... it is still an important historical foundation for the beginning of the MRF!
One goal at MRF is using modern-day "morgellons" to help all people with skin problems that are slapped with the label DOP, with an eye on eliminating this archaic diagnosis from modern medical text.
This gives "modern-day morgellons" a whole new meaning! The concept does create interest.. "a 1600's disease re-emerging".. Helps strike a little notoriety in a world where we are so bombarded by fear that we hardly even notice it anymore.
Scientifically/technically it may not make sense to use the term, but from a marketing/recognition standpoint.. it has it's advantages!
hope this helps.
spec
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Post by skytroll on Jun 13, 2005 19:53:14 GMT -5
Spec, I like the idea of doing this, lets say the first week of July, simutaneously all over the country and world if we can. I was posting a word for the day in my yard for about 4 months. I did put morgellons on there and said with a picture of eyes looking up. To look it up. I would put down words and short definitions of words because I do think people are so inarticulate these days, I was just trying to educate the public. My family thought it was cool. People walking by would ask if I was outside what the word of the day was. Then, some hoodlums came along and messed with my yard real bad, so stopped doing it. The helicoptor idea was great. I was thinking of putting flyers out saying....... WHAT IT THIS ATTACKED YOU? WHAT WOULD YOU DO? YOUR DOCTOR WILL NOT HELP YOU, YOUR LOCAL HEALTH DEPARTMENT WON'T, YOUR DERMATOLOGIST WON'T. YOUR ALLERGIST WON'T. YOUR INFECTIOUS DISEASE DOCTOR WON'T. BUT, YOUR PSYCHIATRIST WILL. HE WILL DOPE YOU FOREVER WITH ALL KINDS OF MIND ALTERING DRUGS. OH, YOUR VET MIGHT BE A BETTER DOCTOR THAN ALL THE AMA. CHECK OUT WWW.MORGELLONS.ORG FOR YOUR OWN EDUCATION, JUST IN CASE YOU GET THIS SO YOU KNOW WHAT TO DO. THE CDC, NIH, AND THE WHO ARE ONLY FOLLOWING AND BEGGING FOR MONEY FROM OUR GOVERNMENT WHICH CARES NOTHING ABOUT OUR LITTLE DISEASE, WHICH WILL NOT REMAIN LITTLE FOR VERY LONG, BECAUSE, THIS COULD ATTACK YOU AT SOME TIME IN THE NEAR FUTURE, YOU SEE, THIS IS GETTING BIGGER AND BIGGER. SO, PLEASE DO EDUCATE YOURSELF ON THIS. IT MAY VISIT YOUR TOWN, YOUR HOME, YOU SOON. SKYTROLL
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Post by Lisa on Jun 13, 2005 20:14:30 GMT -5
What about newspaper ads? I know in the main part of the paper it would be too costly (already looked into it yrs. ago), but what about the Classifieds? I'm not sure what section of it though would get the most attention. For those that could afford it and if Mary thought it was okay, maybe we could take out an ad in our local newspaper? Have symptoms listed and the website.
Skytroll, I don't have the guts to do it, but on heavy chemtrail days....the days the sky is nothing but X's turning into clouds....I would love to put a large sign in my yard that says: LOOK UP! or how about this one... TIC-TAC-TOE ANYONE? with an arrow pointing up.
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