At last "Morgellons" on CDC site. Aug 31, 2009 3:22:22 GMT -5
Post by kammy on Aug 31, 2009 3:22:22 GMT -5
Unexplained Dermopathy (aka "Morgellons")
It's almost time that we should be hearing something from this 1 year study by Kaiser for the CDC. I personally don't understand why the CDC isn't doing its own study, but... who knows how they 'discover' a new disease? Just wondering what all those tax dollars allocated to the CDC goes for and what the history of disease discovery has been in the past?
We should be hearing something any day now?
And, there's been talk of a Morgie rally in Atlanta in front of the CDC building in September or October if we haven't heard something by then or if our disease is not taken seriously in this upcoming report?
First of all, I want to address how the CDC has kept us and our disease at bay, bringing us more harm, by not giving us a name. We need a spokesperson to represent us, we need a liaison with our interest at heart! We need to let it be known that we demand to have an official name for our disease. Why is that so important?
Because, if you have this disease or any interest in it, and go research it - there's very little information available because the disease has not been named. Just go to PubMed, The Mayo Clinic, go to Ask.com, A-Z Medical Diseases and put in "Morgellons" and see what you get? (I see that "Morgellons" was just entered into Wikipedia under that name, this is new.)
As per the CDC Web Page - aka - an alias... not a real name and "Morgellons" is in quotes... indicating this is not a real name for a real disease, giving us less credibility, more abuse but in a different form - it's subtle to those who think, 'ah, they are finally giving us attention by recognizing us'... the longer they can keep us at bay the better it is for somebody, and it ain't us!
Yes, my Dermatologist said a year ago that the CDC is going to start collecting data on who has this disease so we can create support groups in our communities to help each other... uh huh... you think they want us to get together and start comparing notes? Seems very strange to me that the CDC isn't collecting demographics on this disease to begin with?
What do you think is going to come out of this upcoming report, do you think we'll at the least, finally get an 'official' name for our disease... another little crumb or more of the same for this "Internet Disease", that's what some doctors call it, maybe, they will ingratiate us and choose that name for us?