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LymeBusters :: Morgellons :: Morgellons - General Discussion :: sharing my correspondence with the CDC Page 1 of 2 » Jump to page   Go     Author Topic: sharing my correspondence with the CDC (Read 402 times) london2146 Guest sharing my correspondence with the CDC « Thread Started on Jun 15, 2006, 1:16pm » Thought some might be interested in seeing my correspondence with the CDC.....If you don't like what I wrote, well too bad. It's too late.....My fist letter I will share was sent on May 28th 2006: sorry to appear acidic, but they are messing with my life and I don't play that. ______________________________________ 05/ 28/ 2006 This is not a joke. I am a Morgellons victim. I had faith that the CDC was already in action to help us with this mysterious illness by some new Task force they had ALREADY?? formed. Is this true, there is a task force formed? If so, since you are a public, government entity, inform me of whom is on this TASK Force? If you can not release the names, please provide their title? Why is there no mention on your website of Morgellons disease? Are you working on this disease or not? Is the CDC lying to the American People- us, the Taxpayers? I anxiously await your answer to these vital questions. I have provided both an email address and my physical address as well as my home ohone number. There should be no problem at all trying to reach me with your answers. Sincerely, XXXXX______________________________ Their blanket reply, devoid of any real answers: Dear XXXXXX, We apologize for the delay in answering your E-mail. Thank you for your inquiry regarding the condition some refer to as “Morgellons.” 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. We hope this advice is helpful and that you feel better soon. (there ws no signature; guess they were a lil scared, eh?) _____________________________________ So, you know I can't let them do me like this, right? so I immediately shot them a quick line......here you go.......: To: CDC June 15th, 2006 Thank you in getting back with me on this issue. I, as have numerous others, have sought out medical attention. Most physicians are labeling us DOP, or Delusions of Parasitosis, and this diagnosis is even being given without a full examination, and some, without any type of examination at all. I would like to know who comprises this Task force to study this disease and when the first meeting is scheduled to convene. If needed, I would be more than happy to assist with this task force and have no problem transporting myself to these meetings. Currently, I am seeking advice, LEGAL ADVICE. I sincerely, appreciate your organization getting back in touch with me. I would highly suggest your "established team of experts" seek onformation from the the Dept. of Agriculture. Thank you for allowing me this suggestion. I do so hope you will not hesitate to contact me if I can be of anymore assistance. My offer to assist this special task force is genuine. Sincerely, XXXXXXX __________________________________ Now, who is hiding what for whom? Hmmm....... They know good and well what this is .....I KNOW THEY DO PS Hi Dan!!! « Last Edit: Jun 15, 2006, 1:20pm by london2146 » Link to Post - Back to Top   Logged justice Full Member member is offline Joined: Jun 2005 Gender: Female Posts: 184 Re: sharing my correspondence with the CDC « Reply #1 on Jun 15, 2006, 2:35pm » Why does the CDC suggest seeing a doctor when we have all clearly stated that they are not assisting us? Hasn't the CDC sent something out to the doctors to contact them if they have patients reporting symptoms of Morgellons? And if this is the CDC's lame attempt at pretending to be 'doing something' about our illness by this apparent 'headcount'- how many heads warrant action? I'm sick of being sick with this! I want to shout it from the rooftops! But will I then just be labeled DOP and my head won't be counted? damned if I do...damned if I don't DAMN! Link to Post - Back to Top   Logged london2146 Guest Re: sharing my correspondence with the CDC « Reply #2 on Jun 15, 2006, 4:29pm » Well you are right there miss Justice..... Hey, they just sent me anonther letter via email today.......here you go........ ps: Man, they said they could not use my assistance.m Hell no, they would like my arse to disappear.....and it looks like we will be waiting a while....... ___________________________________ Dear Ms. XXXX, Thank you for your kind offer of assistance. The composition of the internal CDC Morgellons Working Group has not yet been finalized. The first meeting of the working group will likely occur before the end of June, 2006, but it will not be open to the public. « Last Edit: Jun 15, 2006, 4:29pm by london2146 » Link to Post - Back to Top   Logged london2146 Guest Re: sharing my correspondence with the CDC « Reply #3 on Jun 15, 2006, 4:31pm » whoa, I read that wrong....sorry.....I swear I could have read it to say at the end of Dec. of this year.....I do apologize. Maybe they are not sooooo bad after all??? Maybe. « Last Edit: Jun 15, 2006, 4:31pm by london2146 » Link to Post - Back to Top   Logged l46cheetah Guest Re: sharing my correspondence with the CDC « Reply #4 on Jun 16, 2006, 7:15pm » London, I recieved the same letter yesterday. Laur Link to Post - Back to Top   Logged linagin Full Member member is offline Joined: Jun 2006 Gender: Female Posts: 166 Location: Massachusetts Re: sharing my correspondence with the CDC « Reply #5 on Jun 16, 2006, 7:20pm » London, at least your getting a better response than i did two years ago! BTW have you added your name to the letter by Betsy? I think today was the deadline! Link to Post - Back to Top   Logged Lynne cb Full Member member is offline Joined: Jun 2006 Gender: Female Posts: 145 Re: sharing my correspondence with the CDC « Reply #6 on Jun 16, 2006, 7:55pm » to london, I really do think that they are trying to work on something at the cdc . WHAT there working on i dont no . IT does give us some hope and i think that what a lot of people need right now . there working on some lose in right now then they will be moving along. take care god loves us . Link to Post - Back to Top   Logged leighann Full Member member is offline Morgellon's - The point where Nature and Man collide... Joined: Jan 2006 Gender: Female Posts: 158 Location: Colbert County, Alabama Re: sharing my correspondence with the CDC « Reply #7 on Jun 16, 2006, 9:25pm » Just a suggestion to the new folks here. Not to "bug in" on your thread London, but if I may, ride in on your coat tails. Please go to my thread, Alabama Activity and see the information there. There is no deadline to this and I am in the process of still compiling the information. PLEASE KEEP THE INFO COMING. It is very impressive to se everyone's stories and we are all so far from each other!! Leigh Ann Link to Post - Back to Top   Logged london2146 Guest Re: sharing my correspondence with the CDC « Reply #8 on Jun 16, 2006, 11:11pm » First of all....I'd like to say that I did not post this in anyway to interfere with Betsy's great letter...... I wrote my short letter ( ad lib really) on May 28th- back when we were all discussing the CDC and so on and so forth.....Did 'nt even know I was going to send them a letter that moment, but it just kind of happened.....I was actually looking for something on their site and just saw that small email box saying "contact" at the bottom...... So impulsively, I did.....I did not even know Julie? nor Dan Rutz name at the time I sent that....it was later on that evening or the next when Gregg and Carrie posted to me their info...... and I do believe, this was even a day or so before flowerchild ( love that name) posted her CDC /Senator thread........ It was just out of the blue I got those two emails back from them yesterday....and wanted to share....that's it.....I hope I did not step on anyones toes here by sharing the info.....plus my letter was kind of crappy anyway......but did you not just love the second one (not the pink one...hah! but the one above where I offered my assistance.......to be on there task force..... hehe they wrote me back within a matter of 45 minutes I think.....I could just see them now reading my letter.....Oh, Dear god no......hahaha..... Leigh Ann, I will go do that tonight......In fact I would love to read that......I never wrote to you or to alex thread b/c I just do not like surveys nor giving my information out...never know , you know? But, I then saw your sweet family on that video and knew you were An A okay person.....I hope that did not come out wrong....No disrespect to you or to Alex and also a big thank you two for all the work that you have done on our behalf..... I guess, deep down, I just hate surveys, am lazy and did not want to fill anymore paperwork out......I was just following tamTam around and became obsessed with his riddles....that's all I did was search and search and search.........Lord, I did more work this past year than I did in my first 4 of college........ Thanks for writing Leigh Ann!!! « Last Edit: Jun 16, 2006, 11:14pm by london2146 » Link to Post - Back to Top   Logged onme2 New Member member is offline Joined: Sept 2005 Gender: Female Posts: 16 Location: Tucson, Arizona Re: sharing my correspondence with the CDC « Reply #9 on Jun 16, 2006, 11:49pm » London, I was thrilled to see your communication to the CDC. Although I appreciate the efforts of others to draft a letter to the CDC, I preferred your direct approach. It is my firm belief that cotton, imports and GE bacteria plays a major part in our illness. Furthermore, some may not be aware of the fact that the CDC funded and supported UNL, et al, the research and development of GE bacteria. I doubt very seriously that the CDC will explore this as a posibility. Thanks again... I was about to give up. Glad to see you havn't left. Link to Post - Back to Top   Logged Orion*** Ultimate Member member is offline Law of Logical Argument: Anything is possible if you don't know what you are talking about. Joined: Apr 2005 Gender: Male Posts: 1,756 Location: CO. Re: sharing my correspondence with the CDC « Reply #10 on Jun 17, 2006, 3:14am » You gave them a good punch to the kidneys London. Did I detect one below the belt? Yes--Good. If the CDC don't know it there is a bee hive whipped up out here and they are buzzing the premisis... Do you think that they will inlist an exterminator? Keep a high profile London--they won't dare touch you....Every one here knows what is going on and it's time for the elete CDC to toe the mark because lines are being drawn in the sand--they have no choice but to stand and fight--the time for BS has come to an end,. Link to Post - Back to Top   Logged "No problem can stand the assault of sustained thinking."  Voltaire london2146 Guest Re: sharing my correspondence with the CDC « Reply #11 on Jun 17, 2006, 2:56pm » Dear onme2 and the infamous Orion, Why thank you......you made my day.......Orion, I vote for you to lead the way..... You need to be our Seargeant........Lead the Way our Lil Napoleon.....lead the way....... PS: Loved those analogies Orion........ Onme2, looks like you know what's up........good for you...! Link to Post - Back to Top   Logged erika Full Member member is offline Joined: Sept 2005 Gender: Female Posts: 186 Re: sharing my correspondence with the CDC « Reply #12 on Jun 17, 2006, 3:13pm » You know.. it seems in every broadcast news feed etc, we hear the words, "the CDC started orgaizing a committee this week... How many "this weeks" are there? we should really start keeping a record of dates.. and what lie is said and when to prove how the CDC is pushing us around. In the San Fran Chronicle on June 3rd CDC said they started organizing.. you guessed it, "this week." hmm. « Last Edit: Jun 17, 2006, 3:15pm by erika » Link to Post - Back to Top   Logged cb Full Member member is offline Joined: Jun 2006 Gender: Female Posts: 145 Re: sharing my correspondence with the CDC « Reply #13 on Jun 17, 2006, 3:20pm » THEY all ready have there people working on it . THERE just tying up some lose in . for what ever there nexth step is . take care god bess I we can do now is just pray that they find the answer to this . Link to Post - Back to Top   Logged imblownaway Ultimate Member member is offline Joined: Feb 2006 Gender: Female Posts: 804 Location: California Re: sharing my correspondence with the CDC « Reply #14 on Jun 17, 2006, 3:48pm » what does UNL stand for? Link to Post - Back to Top   Logged london2146 Guest Re: sharing my correspondence with the CDC « Reply #15 on Jun 17, 2006, 4:47pm » Dear Blown, Hey, I'm pretty sure it means University of Nebraska- Lincoln Link to Post - Back to Top   Logged london2146 Guest Re: sharing my correspondence with the CDC « Reply #16 on Jun 17, 2006, 5:07pm » Dear sweet CB, I hope you will pray that God will somehow show to you, to us, thru his loving care, just what revelations need to be shown,. I do believe that God already has shown me, led me, to these revelations.. The CDC knows exactly what this is...... « Last Edit: Jun 17, 2006, 5:08pm by london2146 » Link to Post - Back to Top   Logged erika Full Member member is offline Joined: Sept 2005 Gender: Female Posts: 186 Re: sharing my correspondence with the CDC « Reply #17 on Jun 17, 2006, 7:33pm » cb- what is your connection to the CDC??? Link to Post - Back to Top   Logged london2146 Guest Re: sharing my correspondence with the CDC « Reply #18 on Jun 17, 2006, 11:15pm » Erika, Hi, incase she (CB) does not see your question, I will tell you what she told me when I asked her that verbatim....... She said it was not a personal friend, but just this one person that she began to talk to there about our illness and that she has talked to this same person on more thatn two occasions. i hope this helps.....I had that burning question for a couple of days but could never catch her online. at the right time....but she eventually got the info to me. Link to Post - Back to Top   Logged Mrs. Monk Junior Member member is offline Joined: Feb 2006 Posts: 70 Re: sharing my correspondence with the CDC « Reply #19 on Jun 18, 2006, 7:15am » I am as confused afnd sick about this as you all and whether this research has been ongoing or is just starting we know better than anyone that it cant happen overnite. All those stories saying they are organising a task force this week are taken from the same first report, so they are copieing the words from that first day when it came out, even tho it is no longer *this week*. I am sure things are being done now and it takes some time. If they did just start this task force its only been 2 weeks or so so we have to give them time in all fareness. We have been told for years that our drs need to report th is to health departments but they werent diong it. maybe now since we heard a letter went out to drs, maybe they have been instructed to start reporting.I realise we have been sick and tired for so long but we have to follow rules in order to get things done and I think it will get done now, maybe not as fast as we would like but they cant say they dont know about this any longer. We need to show them that we are serious and not taking anymore lies but we need to show that in reazonable ways. we cant be stepping on toes of ones who are working for us with authoraties and have gotten somewhere, we have to let the system finally work and it will if we can be patent for a while longer. I admire all you here who have done so much and pray for us everday to all get well and healthy. 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