The typical response one gets when inquiring about our disease to the CDC.

The CDC is presently bringing together medical experts from several scientific

specialties in a working group to help us understand this pattern of

illness or syndrome. Our aim is to gather information on people

reporting this condition to see if they share common traits,

experiences, or anything that might have put them at risk for these

symptoms. We hope to learn enough about the condition so we can offer

useful advice for control or treatment, something that is not possible now because too little is known. Since CDC has no clinical center or hospital to evaluate or treat patients, we urge persons who believe they are suffering from this condition or who have distressing symptoms to seek evaluation and medical care from their local health care providers. If symptoms do not improve, we suggest that such persons seek evaluation at the closest teaching or university hospital-affiliated clinic. There is no test for Morgellons. We hope this information is helpful and that you feel better soon.

Thank you for your inquiry.

Internet Response Team National Center for Infectious Diseases

Centers for Disease Control and Prevention

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 cisfl2004@netzero.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 Charlottesville, VA
CDC unhappy with itself? A letter I sent to Dan Rutz of the CDC about the reason why we are not getting doctors tohelp us.   Dan, Hello. This is a very, if not the most important letter I will write to you. I am being told that because this syndrome we have is not a recognized disease, that doctors can not bill for their office visits (some are up to $1,000.00 a shot, ask NASA's DR Harvey about his fees), treatments designed to try and figure out what this is and med. associated with those treatments. I am told that most insurance plans will not pay for anything that is not an already established disease with an already established meds protocol. So how are we suppose to get help if we have state or private insurance providers? Is this the standard rule Dan? If this is true that doctors trying to bill insurance companies for a yet undiscovered disease will be in hot water if they attempt to help us since this is not an established disease than the CDC, knowing that this syndrome exists must do something about this problem? If not the CDC then who? I will go an attack them and leave you alone. How are we suppose to get help from doctors if this is true? Are these doctors making this up? Am I being lied to? So Dan, please tell me how are we to get treatment for this until the CDC figures this out? What are we suppose to do while the CDC takes their sweet time. figuring this out? Are we to just keep getting disfiguring lesions and be sick all the time? Is this what is expected of us? Is this how America treats it tax paying citizens that vote? The CDC must issue an "Investigative Medical Protocol Allowance" which the insurance companies will adhere to until someone figures out what this is we have. This will allow for doctors office visits and various meds protocols to try and figure out what works. I am sure that these doctors will not mind reporting back to the CDC their progress, weekly if necessary and have patients sign "hold harmless" and consent forms. You know this "syndrome" exists Dan and so does the CDC, so allow doctors that are trying to help us bill under a medical code and give prescription permission to battle a multi level disease or have the CDC be responsible for doing nothing about this now that they are aware a need is out there and necessary. Why is this not the first order of business by the CDC? What are we do to when a doctor can not see us became we have something that the CDC has not recognized as a disease, yet the local and state health departments tell us to see a caring local medical professional. Is this a HUGE joke????? They know these doctors can not bill for office visits or meds if they don't know what we have. What would the CDC and the local and state health departments ask us to do this? Dan? Do you have an answer to this question? Until we know what this is how are we to be medically treated? What is happening is that those who have medical insurance and are not rich and are not able to pay these $1,000.00 a visit appt. (to those that have proven by previous patients to have a solution to our suffering,) must continue to get sicker? Is this correct? This also prevents regular doctors with normal fees from helping us because they are afraid that they will get in trouble. I have been told this first hand by more than one doctor. This is prejudicial to the poor and disadvantaged. So the rich get healthy and the poor get sicker and infect their neighborhoods..sounds like a genocide to me. This is VERY important Dan and I will be posting this letter to you on my site and waiting for a response. This is very important to all of us that are sick. This is why no doctor will help us. And the CDC know this and is doing nothing about it. FOR SHAME DAN. This is the sole reason we are experiencing a Twilight Zone episode of neglect every time we go to a doctor. This is the fault of the CDC, no doubt about it. Do you not agree? The CDC can take its sweet time figuring out what we have but we need ot be treated in the interim. This alone is a medical crisis that MUST be looked in to. Don't you agree? Please answer me. This is very important. Thanks, Randy 434-974-7128

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