Call for Entries!

[Doc Holliday]

Originally Posted by xiblanque

Jo....
I'm so impressed with your effort. beyond words....
I think that concise info is important and agree with the list of symptoms
you've listed... too much info would confuse or dilute the message, i think.
Does anyone remember early onset symptoms of intense facial flushing...
along with the brain fog you've listed as poor concentration? in my
experience I both felt the flushing and saw other's experiencing it too.
We were all terrified of it and the term 'Dengue Fever" kept spreading
around... Don't know if it was symptomatic of a particular 'Vector" that
my circle of friends was exposed to or if it is a general symptom of M
that everyone experiences... Very pronounced and an early onset for
some.... If this is common perhap it should be included....

What kind of time line are we thinking for this project? When and where
will these be distributed? What kind of funding will we need and where can
members send contributions? just asking....
Fantastic work everyone!!!!!~
Xib....
more positive input from senior members would be helpful.

>>>my early symptom's were disguised , because I had C.F.S. 13 years prior to morgs.,...my fist symptom was a bite,...2 & 1/2 weeks later got my fist lesion,..and got worse from there. I feel a time line is not necessary,...the most impotent thing is to get it right,...for all the effort and energy not to be wasted,.....T Y Xib,...good input Doc . .....

[Doc Holliday]

Originally Posted by cynical

>>>>Cyn,.....if you have anything to contribute all is welcome,... xx Doc

[posey]

We could all mail them to our Reps. in our State and Congressional Reps. and continue to mail them until something is done; as well as to local news stations and local papers.

For most of us, I would think that if we mailed them to local news stations and local papers an individual may want to remain anonomous because we wouldn't have the support in #s from each other. So I don't know how that could be done and still hold credibility except that if nationwide/internationally they were continuously received, it would be bound to get some attention.

However, I don't know the financial status of everyone and how much they would be able to afford to spend via mailing. I know we have all spent alot of $s and some have spent alot more, even losing things in their search for something to help/cure themselves.


I love this idea and I think it is a good move to start shakin things up and get someone nervous or whatever. But we have to stop NOT making any noise about this horrible disease. ZI'm to the point that I don't care whee it csme from and I would not sue anyone if it is man-made. I just want this horribke thing out of my life so I can be a Mom, Grandma, Wife, Friend, and kick the "distance loving" out of my life.

Right now I think of myself as a literal "living-dead" grandmother.

Now, I want to go back and finish readinf ALL the replies on this idea.

[Doc Holliday]

Originally Posted by cynical

>>>ya Cyn me too ,..been doing all this with knee monya,.. he he ,...but a fact,...I do like to have fun,.... laughter lightens the burden of the heart. ,,doc

[posey]

at least I don't think I have seen it posted.

Jo, and everyone else,

Wouldn't it be a good idea to put on this flyer some credible links, such as the research paper which was recently published by CCID titled:

Morgellons disease: Analysis of a population
with clinically confirmed microscopic
subcutaneous fibers of unknown etiology

[Jo]

Originally Posted by xiblanque

Jo....
I'm so impressed with your effort. beyond words....
I think that concise info is important and agree with the list of symptoms
you've listed... too much info would confuse or dilute the message, i think.
Does anyone remember early onset symptoms of intense facial flushing...
along with the brain fog you've listed as poor concentration? in my
experience I both felt the flushing and saw other's experiencing it too.
We were all terrified of it and the term 'Dengue Fever" kept spreading
around... Don't know if it was symptomatic of a particular 'Vector" that
my circle of friends was exposed to or if it is a general symptom of M
that everyone experiences... Very pronounced and an early onset for
some.... If this is common perhap it should be included....

What kind of time line are we thinking for this project? When and where
will these be distributed? What kind of funding will we need and where can
members send contributions? just asking....
Fantastic work everyone!!!!!~
Xib....
more positive input from senior members would be helpful.

ps..concerning the Contact info section on the back...
useful sites and numbers for more info....
the morgellonssyndrome@cdc.gov site... is this a site with a petition or some sort
of call to action? If not can we provide a link to such a site?

Did you experience flushing without a trigger (eg no panic attack)?

I know some people who have got it like a wave, but they've all been menopause age, so difficult to know. What do others think on flushing as early morg symptom?

I did consider journal refs on contact panel, but think hopefully folks interested will go on websites listed and get the full picture, inc all research available.

A link to the petition is a great idea.

We can use this leaflet in as many ways as we see fit. So lets have some ideas on targetting individuals, organisations and outlets. They can also be used for the rallies.

Production can be very grass routes. If anyone's got access to cheap printing, please shout! OR if anyone feels able to take on getting a load printed, great!

Jo xxx

[posey]

I posted it here:

YOU ARE GOING TO LOVE THIS- Psychiatry Online

[xiblanque]

courtesy of SadSack!!!!

also.... Yes to the flushing!!! know that Xiblanque is kinda androgynous sounding...
means Jaguar in Quiche Maya.... but I'm a Guy.


can we add this to the pamplet?

Research on Morgellon's Disease - The Petition Site

[zara cybele]

... I just thought that was menopause.

Jo, I'm wondering why you specify Vitamin C and B12 as supplements to take.
There are so many protocols and different supplements out there, that I feel it might be better to just suggest supplementation and let folks look around and decide what they want to take?

I still have to try and open your document. Will do tomorrow.

[Doc Holliday]

Originally Posted by posey

I posted it here:

YOU ARE GOING TO LOVE THIS- Psychiatry Online

>>>>Possey,.....very good find,... congratulations and thank you. Doc