pamca
Junior Member
Posts: 74
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Post by pamca on Aug 30, 2006 2:52:00 GMT -5
I hate to sound paranoid, but I am hesitant about giving my name and number to a government agency. Especially the current administration.
Just look at how they're attempting to keep us safe. Open borders, ports, etc. How about Katrina? Do you think they really care. And if we give our name and number, we have a permanent government record of having a contageous untreatable and potentially lethal disease.
Suddenly we'll be wondering, where's Spec. or Carry or Frisky. Maybe some prison camp in an eastern block country?
I really want to believe it's okay to call the CDC. I really want Morgellons studied. Am I being paranoid or do others share my concerns? pam
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Post by specuelatin on Aug 30, 2006 4:04:41 GMT -5
I am pretty sure that I don't have quite the level of Lyme disease I had before months and months of Salt and C. What I found was I had a lot less anxiety. I don't really think it qualifies as paranoia to be worried about questions like>> we seem to be doing them a favor letting them know that there is this probable infectious disease, and why aren't they just jumping on it? Then read anything with government. Budgets and red tape galore. The picture is crystal clear, they can't see this as a drop dead kind of illness, so they shuffle it off to more pressing issues as they see it. It's a war to get things done in government. I'm surprised they have gotten the CDc this far with the media events holding their feet to the fire. It took American with Disabilities 40 years and 4 lawsuits to get handicapped parking and ramps for wheelchairs. I hope this doesn't sound discouraging. Just try not to let certain postings by certain individuals get to you. We are moving down the right track with the CDC. Here is what Rutz is saying, cryptically, "We still don't have enough complaints here, if you want help we need volumes.. get to work!" He can't actually say it. If they wanted the whole thing to fail, they wouldn't have mentioned it so early on. They'd wait like 3 months and say, "BLAH!" Instead what he is doing with this statement of "only 100 or so calls" is signaling us for input. It is not the job of government to get people to exercise their rights. He isn't SUPPOSE to be coaching. How can they justify real funding when there are only 100 calls? The hand writing of "nO FUNDS FOR MORGIES" WILL be on the wall without those phone calls. As far as them doing something to us, they have no reason to bother... trust me they don't want to deal with "spec in captivity"! LOL ;D just ask frisk! Ask that your name and address be held in confidence within the CDC. The administration has no right to that information. If you read my History of Disease Reporting thread, you will see that the CDC also did not want the identities of AIDS victims and handed down recommendations that the identifying info be expunged at the STATE level, so the CDC only had the records and NOT the private identifying info. Actually, they really don't want our information. They are just stuck getting it because they are trying to attempt this study. Now, let's give them grounds to help fuel things along. It would be GREAT if some of you from Florida, Texas and California ask your three Governors IN UNISON to invite the CDC in because the problem is beyond the capability of the States to take care of. Then the CDC is empowered to do what they are NOT empowered to do right now. If the study team does NOT come up with a solid conclusion that this is NATIONAL EMERGENCY type material, they may well conclude that they don't have authority to move in on the States Rights and do a study. It appears to me that California may have made such an overture as they are seemingly going to place the study in CA. I'd hate to see this fizzle out, because it might be a long time before it can be resurrected if that occurs. spec PS Missouri is a cohesive group, you guys might think about sending a joint letter to your Governor asking her/him to invite the CDC in. No telling if the CA, FL, TX coalition will form in time to get the Governors to act.
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Post by imblownaway on Aug 30, 2006 13:11:36 GMT -5
I understand about being paranoid however this cant be contained by locking us up. Theyd have to quarantine all animals,insects, clothing ,air .... I hate to sound paranoid but this is out of control already. It up to us to speak up no matter what.
Im already in to deep as far as the government goes. They got my number and address so I have no choice but to keep pressing on. Because frankly I feel that deaing with this disease is out of my league. Its out of most doctors league. I talked to one yesterday said they are seeing more cases and really dont know what to make of it. Treating for secondary infections exct. And sence they have no cause to think it might be that serious. It is not being reported. Alot of proggress has been made recently. We are alot better off now than we were. At least we have letters to bring to our doctors and can say its been featured on medical mysteries. Anyway I just e-mailed the governor of california. Thanks for the encouragement speculatin. Go to the library if your scared of being tracked. But please let your voice be heard not silenced in fear. If it werent for the brave souls in the media and such we wouldnt have gotten anywhere. For other Californians who want to write Arnold its governor@governor.ca gov . Cause we need the terminator.
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Post by Patti on Aug 30, 2006 15:14:02 GMT -5
It's a war to get things done in government. I'm surprised they have gotten the CDc this far with the media events holding their feet to the fire. It took American with Disabilities 40 years and 4 lawsuits to get handicapped parking and ramps for wheelchairs. .....................Here is what Rutz is saying, cryptically, "We still don't have enough complaints here, if you want help we need volumes.. get to work!" He can't actually say it. If they wanted the whole thing to fail, they wouldn't have mentioned it so early on. .....................It is not the job of government to get people to exercise their rights. He isn't SUPPOSE to be coaching. How can they justify real funding when there are only 100 calls? As far as them doing something to us, they have no reason to bother... Now, let's give them grounds to help fuel things along. I couldn't agree more! Considering the short amount of time it's still been since our letter to them as well as the media exposure with quotes from Mr. Rutz, I think we are very fortunate to have received any responses at all......not to mention a Hot Line that has already been set up. Do you realize the importance of this and how certain individuals on our behalf were able to accomplish this in just a few short weeks? I daresay they are trying to see if this is as prevalent and disastrous as we are claiming, so we need to let them know the answer is YES! We cannot stress how important it is to make the phone call and show them our claims of mass infection are indeed true. They have taken the first step with a public statement and a Hot Line, now we must all do our parts and flood that phone line with a legitimate accounting of everyone suffering from this disease. It's understandable to be a bit leary about leaving your personal information but I honestly don't think we have anything to worry about. They are already under scrutiny on the whole vaccine issue so I believe they will jump through hoops if necessary to avoid another negative spotlight on themselves. We have many Senators and also members of the media who are after them to continue looking into this, so let's all give them the proof needed to take this as the serious issue that we know it is. One ring-a-dingy, two.............., and thank you!
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Post by 22122 on Aug 30, 2006 21:47:38 GMT -5
I just wanted to point out that maybe we should get this information to other boards that handle Morgellons issues. That way we will be sure to get more callers. Perhaps contact jj and let them know and if it is agreed upon and only then a designated person can post to other groups. Someone like Skytroll might be a person in the know about this and could coordinate for jj is she does not know of other groups.
It will be harder to control though and some with undefined symtoms that might cloud the issue might be report in. This is a reason to leave the information only here. There are some boards devoted only to Morgellons. Hope this sparks some thoughts.
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Post by jj on Aug 31, 2006 9:32:53 GMT -5
22122,
Thanks for sharing your suggestion. The hotline # is now public knowledge ....... people will share it and use it as they see fit. Anything anyone does to make sure it is futher destributed will be a good move.
There will always be those who's anger, fear and frustration overcomes them (which is understandable) and the # may be used to lash out irrationaly ..... realisticly,it happens and has been for years. Overlook that possibility and keep pushing forward. It's great to see the responses here have been positive and encouraging.
I must admit I'm a bit confused about the statement about Rutz only receiving 100 calls in relation to this hotline number. It wasn't clear in the article quoted whether the statement was in fact relevent to the 'hotline' count. I remember the '100 calls' statement from previously published article(s) quite a while back. It may even have been in the article where the 'debunk' statement was made but not for sure. Maybe someone else remembers this as well. I do know that some of these reporters 'pull' numbers, quotes and other info from past articles that make their own article quite innacurate and out of date.
In a nutshell .... I think they have recieved more calls then stated in that article and like 22122 stated, lets work together to keep those calls coming in. Thanks for all you do! ... JJ
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Post by imblownaway on Aug 31, 2006 13:38:31 GMT -5
I just spoke with a nice lady from my local health department. She said she had checked the cdc site and had found nothing about the information i gave her before. However I was pleased to give her both the hotline number and the email adress for morgellons. Health departments are unaware of any of this. She is going to check it out now!! Ill speak with her again tommorow. I realise there is not alot she can do at this point. But I feel better knowing I am doing all I can do to help me and my children. We have to inform the health departments along with our doctors. It shouldnt be this way but it is. Please pick up te phone. you can even call after hours and leave a message with the hotline number on it.
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Post by Patti on Aug 31, 2006 14:58:33 GMT -5
Imblownaway, thank you so much for all your efforts! Yes, contacting the health departments is another thing we all can try. The initial request was for us to have our doctors contact the health departments (then they would contact the CDC), but why would our doctors do that if they don't believe us? Guess we need to take it upon ourselves to contact whomever we think is relevant, and your state (or even local) health department is a good place to start. I must admit I'm a bit confused about the statement about Rutz only receiving 100 calls in relation to this hotline number. It wasn't clear in the article quoted whether the statement was in fact relevent to the 'hotline' count. I remember the '100 calls' statement from previously published article(s) quite a while back. It may even have been in the article where the 'debunk' statement was made but not for sure. Maybe someone else remembers this as well. I do know that some of these reporters 'pull' numbers, quotes and other info from past articles that make their own article quite innacurate and out of date. I am thinking the same thing JJ. The date the Hot Line was set up is just a few days before the date of the article, and I imagine they worked on the article for several days after the interview and prior to publishing it. There have been many references to 100 people in different articles, most notably the ones from Texas. This could have been misinterpreted, or it could be Mr. Rutz was quoting a contact figure prior to the implementation of the Hot Line. He even is quoted here in a July 2006 article: "Not a day passes when I don't talk to somebody who claims to have this," said CDC spokesman Dan Rutz. " seattlepi.nwsource.com/national/272624_morgellons03.htmlEven so, it would appear that more than that have contacted them, from fairly recently to way back in the "stone ages", as it seems now. I know there was a large bunch of us who called and wrote them as far back as 8-10 years ago.....but then, nobody knew back in those days what we know now. Persistence pays!
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Post by Sidney on Aug 31, 2006 15:11:12 GMT -5
I'm still puzzled and a bit annoyed at the reference to 100 phone calls which is still total horsefeathers. Too many of us remember a few years ago when we were trying to deal with a certain Ms. Mary Shepherd at the CDC.....and of course beating our heads against a stone wall as we WERE stonewalled.
Oh the phone calls! Oh the letters, tales of woe and despair and some of the letters a tad more than hostile...
And, my own first experience with certain "doctors" at the CDC back in 1995. After far too many dealings with people who obviously didn't give a rat's patootie, I took my weepings and wailings somewhere else or just shut up.
Still, to imply one hundred reports whether by phone or otherwise is simply unfair to us as well as untrue. Probably a case of the left hand never knowing what the right hand is doing...No communication among the various departments.
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Post by specuelatin on Sept 1, 2006 1:10:15 GMT -5
Not a bad idea to write down the date and time of each of your phone calls and just a little about the content. The CDC needs to have something very legitamate in order for them to get through the checks and balances in their budgets and get funding. This committee is going to have to prepare a proposal for a budget and then it is going to have to get approved. There are about four different possible procedures that may be employed depending on the type of financial arrangements that surround the CDC and their budget. It would be irresponsible of the CDC to make any comments on what they will be able to do until they get their proposed budget for this activity approved. That's how government budgets work. Back in the day when the stone-walling was occurring, the CDC did not have national news coverages, reports coming in for years, request from a state (California) for help with this scourge. The whole picture has changed and they can possibly get the funds now that they have these facts to support a proposed budget in evidence. So, don't give up. Keep calling and writing. The CDC needs US to qualify any funds for its committee to continue its work. I'm impressed that they managed to get funding approved for the committee to begin. Now they are going to roll forward September what ? 10th! Great I hope they can support a case for further research and proposals for funding in their next annual budget. spec
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Post by lydski on Sept 4, 2006 12:18:51 GMT -5
i am so overwhelmed by all of you people, God Bless You All! am calling cdc hotline now.
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smkie
Full Member
Posts: 118
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Post by smkie on Sept 8, 2006 14:00:03 GMT -5
i called, left my e-mail and phone number before the announcement of the "recording has stopped" came up. I pray this does some good.
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Post by Admin on Sept 8, 2006 14:07:22 GMT -5
We appreciate that this was your very first post, Smkie....thank you so much and welcome to the board!
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Post by rosebud on Sept 9, 2006 17:14:27 GMT -5
I called and left my name and # GOD BE WITH US ALl
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sisi
Full Member
Posts: 122
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Post by sisi on Sept 12, 2006 11:24:04 GMT -5
I have called the hot line and now wanted to send an e-mail. I tried the address listed on this post: morgellonssyndrome.cdc.gov --but it isn't going through. Does anyone know if it has been changed or removed?
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Post by Patti on Sept 12, 2006 12:05:01 GMT -5
I'm just guessing here but maybe it's morgellonssyndrome@cdc.gov? The other one appears to be a website address but doesn't come up.
I think if you call the toll free number....1-800-311-3435 ext 6, maybe they can/will give you an email addy?
Good luck, and let us know if you have any luck.
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Post by sammy on Sept 12, 2006 12:17:40 GMT -5
I would like to know if Texas has been told to call and Cal.? Plus after 5 years of calling and letters and emails, maybe they should feel lucky to get even that many who trust them anymore. But , they also have alot going on internally in the CDC. I'll post part of it later. I think trouble for the way things were being handled.
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sisi
Full Member
Posts: 122
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Post by sisi on Sept 12, 2006 12:51:27 GMT -5
Thanks Patti--morgellonssyndrome@cdc.gov is the correct e-mail address !
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Post by questionhair on Sept 12, 2006 13:11:08 GMT -5
There was a telephone call with Dan Rutz that was reported on the Human Biology website: biology-online.org/biology-forum/about1958-3816.htmlIt looks like they ("CDC") are considering doing biopsies. I hope it's not Punch Biopsies. Punch biopsies might not be good. In all my reading of different posts by different people over the past few years, I don't recall anyone having had a punch biopsy getting any "findings" with that test method. If there was someone that had a result or finding with a punch biopsy, I don't recall who it was. Does anyone? If you don't use the correct test, you will find nothing. It's akin to someone having an earache and the doctor doing the little hammer test on the knee. QH
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Post by sammy on Sept 12, 2006 13:24:06 GMT -5
Small section from article, " Untill now, many of the agency's current and former scientist have refused to talk publicly about what they see as the agency's problems. Concern has reached critical mass in recent months, prompting even some who are still employed by the agency to fear that staying silent will do more harm to CDC than airing the agency's laundry in public. They say changes at the agency are putting CDC's performance at risk The sense I get is a lot of the decision - making and a lot of the resources are getting moved away from the scientific underpinnings of the agency,said Dr. Stephen Ostroff, who was deputy director of CDC's National Center for Infectious Diseases until he left the agency last year. This was found at www.ajc.com
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