Dr Louise Gerberding:
Hello and thank you for your letter in response to the one I wrote to George Allen.
I am an activist for this disease and it is my duty to ask questions of your letter to me, if you would permit me. I will try and be as respectful as possible, so please do not take my words as anything but direct and to the point since without talking to you in person it is hard for you to understand the tone of a letter when emotion is involved. So permit me, if you would to express my beliefs.
I have had this for 18 years. I was in remission for 10, had it for three and it has been back for 5 going on six. I am also working on a project entitled the “National/State Fiber Disease Syndrome Project” I do not have any letters after my name and the project I am undertaking is quite large but it has gained momentum, to my delight and surprise.
I prefer not to call it Morgellon’s since Dermatology Today equated the term “Morgellon” as DOP and now doctors are not being honest with patients when they state that they believe they have an unknown skin disease. This is, of course unacceptable behavior when the medical community is told to lie to patients, but that’s what this magazine instructed dermatologist to do, to act in a criminal capacity to desperate (mentally ill, according to them) patients.
You must understand that all of us, which have been in this struggle for recognition, have heard what we call the “blah-blah’s” time and time again and can recognize them from what we call the “honest skinny.” I would like to review what my “Blah-Blah Meter” has monitored as a reading in your correspondence to me.
Let us proceed to your bullets on the letter you sent to me with a July 19, 2007 stamp.
Bullet #1): This group “is planning…..” We have heard this for over a year and they have yet to get past the planning stage and we have yet to receive a copy of this so called “plan.”
Bullet #2) This “initial screening case definition” we have yet to see. If you have one, please e-mail me a copy so that I can post it on my site. If I do not receive one, I have to assume that there is none.
Bullet #3) This mysterious and yet to be seen “Drafted protocol.” (I do not mean to be rude but you must understand that without seeing this document, how are we to believe it or any others exist? (We believe that they do not until we see them. If I am required to FOIL them, I will. Please let me know if this is what we have to do to get these so-called documents.)
Bullet #4) “Arranged” I have heard this for over a year. Do you have a date for the sample collections? I know of no one that has been asked by the CDC for samples. How is it that if you do not have a lab you will be gathering them? (I am secure in the fact that you can understand how this looks like a HUGE “blah-blah.”)
Bullet #5) I e-mail and talk to Mr. Dan Rutz, the “moving dart board” for this project. If what he knows is keeping the leadership “abreast” then the information has had a mastectomy.
How is the CDC gathering all these samples without a clinic? How untainted are they and is there a “chain of evidence”, so to speak?
Paragraph #2) “Common risk factors” Now this is playing with fire and a huge “warning” light goes off in my head when I read words that are structured in this manner.
We, that want the truth about this disease, must insist that not a single person with a drug, substance abuse, inclusive of alcohol and/or prescription drugs be used in this study or we will consider the sample not to be pure and in fact to be quite tainted. The results of this type of study will be considered invalid. I CAN NOT stress this point enough. “Share common traits, experiences or anything that might have put them at risk.” That is what I call an agenda. A clean sample to study or the study is invalid and we will fight your findings tooth and nail and make this bias very public.
I know of many people that do not drink, use drugs, take prescription drugs, have a history of mental problems, have lyme or even smoke cigarettes and have this disease. If you can’t find these people, then call me and I will find them for you. I am one of them. If “tainted” subjects are the only people you are using in your study your have an agenda and I am letting you know that we know. You would not study cancer by using drug addicts and alcoholics Study have to have PURE samples. Find them or there is no valid study.
My phone number is 434-974-7128 and my e-mail address is email@example.com and my site, dedicated to a solution for this syndrome, which you can post the answers to my
Questions, is located at http://unknownskindisease.com. I am revamping it this week, so please ignore the typos.
I wish you the best of luck in answering my inquiries with honesty and for seeking the truth without a preconceived agenda.
With respect for those that are sincere,
Randy B Yaskal