Idea. I need everyones help please.

[Vlburge]

Dear everyone,
I've come up with an idea. If more people know about Morgellons, than more research will be done. I've decided to begin writing a book, a few stories straight from the victims mouths to convince any non-believers, and to inform the people who don't know of this, about what you deal with day to day. The struggles that you face. The discomfort you feel.
Not too many people know of this. Not nearly enough as there should be. This is an epidemic, a malady that is sweeping the nation, and more people need to be aware, and more people need to understand.
Please, your help would be greatly appreciated.

Thank you all very much.
Sincerely,
Vanessa Burge

[jonsi]

Hi Vanessa,

I think the best way to spread the word about "M" is to start support groups. Sadsack has a wonderful group in Tampa. You might get some great info from her....

As individuals it is very difficult to get anyone to believe we are sick. If you go to the introduction section on the main page of this site you will find many stories. Most MD's diagnose us with "delusions of parasites" DOP, and it this is very hard to take because we are not imagining this. I went to four MD's and they all said that I was pretty much "crazy".

Send any of us a "PM" personal message and perhaps some of us will be willing to share our stories.

Do you have "Morgellons"? Does someone in your family, or a friend, have "M"? Please share with us.

In the white light,
~jonsi

[brat789]

I thought about having all of us and our family and friends pick a day to do an internet search on Morgellons. Maybe it would come up in the top searches on the search engine pages and people would look it up wondering what it is. I even thought of putting mysterious signs up (like campaign signs or lost dog type signs on telephone polls). If we could all do this in the areas we live people might look it up and realize that they too have it.

I like your idea also. I can give you my story for your book if you need/want it.

[Kritters]

Welcome to the forum, Vanessa and thanks for your thoughts. Based on the amount of people who join here, I'm guessing awareness will grow exponentially through the internet.

Great idea, Brat about the search on the same day!

A few years ago we were hashing around some ideas, too. T-shirts with something like, "do you have Morgellons?" or something similar just to get the name in front of people. You know how you never have noticed a particular car, for example, until someone you know has one?

Kritts

[Sadsack]

An idea that has been proposed many times, and I think is an excellent one, is to put together a flyer with a basic description. Have links to scientific information or reputable journal articles.

Go to places where a lot of cars are parked and stick them under the windshield wipers. Encourage them to register at the various sites that track numbers, and to contact the CDC. (Love to inundate the CDC with NEW cases; they are resistant to making this reportable).

There are MANY below-the-radar cases out there. A couple of weeks ago I had a Morgellons table at a Health Fair. It wasn't a huge event, but two new cases surfaced as a result of coming to the table. That's about one out of fifty people who passed by my table.

I was very careful about the information I passed out - I had the CDC information, the Mayo Clinic info, and some journal articles as well as NMO and MRF information. IMO, information that newbies see should be mainstream and objective; just enough for people to say "I think that is what is wrong with ... (me, my cousin, my friend, etc).

The other thing, which is much harder to accomplish, is supportive media attention, especially TV. Shows like Mystery ER ("String Theory"), Cindy Casey's story, The Doctors, even Dr. Phil with Judith K. (though he seemed a bit skeptical) reach the widest audiences.
I know that the Australian "60 Minutes" is doing a piece for release at the end of Feb. I have seen some of the communication from the producer, and he is very much a believer who has done his homework, so this should be a biggie. I just wish the US "60 Mintutes" was running the story.
Contacting these kinds of shows and asking them to cover Morgellons is something we can do. An individual email won't make a lot of difference, but MANY might.


SS

[Vlburge]

Jonsi,


No, I have no personal experience with Morgellons.

I first heard about this disease just youtube-ing different conditions, this was maybe two years ago, and I was looking for a disease for an epidemic research paper. This caught my eye, because no one really knew about it, yet so many people have it. My teacher suggested, because of the lack of information on this topic, that I research something else, but in the end, I was able to write 5 typed pages on it.

I'm now in an independent study class. My teacher lets me make my own work to do. So, I decided to write a paper. This topic popped into my head, and I wanted to know how much the medical community has advanced towards a cure.

After stumbling across a site that people were posting their stories on, it occurred to me. To tell people what the doctors say, how much will that impact them?
Answer: Not too much.
But if you personalize it, and give them the truth straight from the people experiencing it, it will hit a lot harder, impacting many more people than just the ones who understand the medical terms.

Thank you for welcoming me here. I really do appreciate it.
Vanessa

[Sadsack]

Vanessa -

YOU ARE A


Thank you for taking an interest in this. If only there were more like you out there!

SS

[Kritters]

I did an independent study for college (when I went back at age 36) and called it, "the effect of aerobics on health". It was a totally lame and half-baked study based on my classes. Sly little girl I am ;-)

Vanessa, you are to be applauded for actually studying something of real significance!!!! Thank you so much for your contribution.

Kritters

[Vlburge]

Thank you SS and Kritters.
I guess it's good to be a bookworm. Hehe.

But I feel as if some of the information that I've gotten from the internet is false.
I'm sure that I know only a microscopic percentage of what there really is to know about this. That there is so much more that could be found out.

I have a few questions about this disease, that I can't seem to find.
Other than suicides, which I can imagine happen, is it deadly?
Is it localized, or is it throughout the body?
Is it constant discomfort, or is there periods of time when there isn't?

If someone could help me understand better, it would be immensely appreciated.

Thank you,
Vanessa.

[Sadsack]

Vanessa -

As a result of the foot-dragging and outright refusal for many years to even consider this affliction, most of what you find on the internet is really conjecture.

People have been desperate and taken matters into their own hands and tried to find answers.

The research that has been done by credentialed scientists is very limited, and you really have to stick with what has been proved using strict scientific methods if you are going to write something up for a paper.

The best method for finding articles of this caliber is to google search using "scholar" advanced search. Be careful, though, because many of these articles are in psychiatric journals and are at least as speculative as what our home grown researchers do. And even more false.

I'll answer one question, though - anyone who knows anything about this condition agrees that it is systemic, and not a skin condition. If anything, by the time it erupts into skin symptoms, it has probably already pretty much infiltrated the body.

SS