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Post by dc10801 on Nov 5, 2009 22:52:10 GMT -5
You gotta be freakin kidding me, did we get shafted again? Preliminary Report on Progress of External Peer Review of CDC’s Unexplained Dermopathy Project to the CCID Board of Scientific Counselors November 4, 2009 In January 2008, CDC launched an epidemiologic investigation of an unexplained skin condition which some refer to as “Morgellons.” The primary goals of the investigation are to help us learn more about who may be affected with this condition and the symptoms they experience and to generate hypotheses about factors that may contribute to it. Data collection has been completed and analysis is ongoing. This investigation was conducted out of the National Center for Zoonotic, Vector-borne, and Enteric Diseases’ (NCZVED) Division of Parasitic Diseases (DPD), with input from a cross-agency, multi-disciplinary workgroup. On September 24, 2009, DPD convened an external review panel to examine study activities to date and provide advice on future activities. DPD outlined several questions for the panel to address: 1. Have the project’s goals and priorities been addressed? 2. What are the study’s strengths? 3. What are the study’s limitations? 4. Are there gaps of concern or need for additional study? 5. What findings can be communicated to the public, medical community, and stakeholder community? 6. What is the public health impact of this study? 7. What should the priorities be in the future? The panel has not yet released a report of its findings to CDC. When we receive a report from the panel, we will share it with members of the BSC, along with the program’s response to the panel’s findings and recommendations. DPD and NCZVED leadership will meet with CDC leadership to discuss options for future program activities to address any issues raised by the panel, including considerations for potential organizational home for further research.
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Post by ppy18 on Nov 5, 2009 23:03:02 GMT -5
Updates November 5, 2009 On Wednesday, November 4, 2009, the following statement (Preliminary Report on Progress of External Peer Review of CDC's Unexplained Dermopathy Project to the CCID Board of Scientific Counselors [PDF, 11 KB]) was presented to CCID’s Board of Scientific Counselors (BSC) meeting. The statement describes the External Peer Review Panel's process and progress in developing a preliminary report for CDC. The panel met in September to review CDC's Unexplained Dermopathy Project. Because this panel was convened only recently, the panelists need additional time to finalize their recommendations. The panel has said that it will submit its report as expediently as possible once it has completed its task of reviewing all aspects of the project that it was charged with reviewing. CDC will provide that report to the BSC members and post it online when it becomes available to us.
We are currently analyzing the data collected in the study. When data analysis is complete and results of the study are available, the findings will most likely be published in a peer-reviewed scientific journal and disseminated through other channels, to CDC’s public health partners, such as State and local health departments and medical societies, and through this website.
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Post by dc10801 on Nov 5, 2009 23:11:32 GMT -5
so another "open ended deadline" WHEN I was working (and didn't have this morgellons) I'd love to have been able to pull this with my clients being as how I billed by the hour. I'm just waiting for them to say "we had the results, but the dog ate it" Sorry for the rant but the bloods boiling right about now.
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Post by dc10801 on Nov 5, 2009 23:25:56 GMT -5
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Post by chaosonline on Nov 6, 2009 0:02:30 GMT -5
This is a joke. I didn't expect much but this is ridiculous blabber. Here is the Wiki time-line for the CDC investigation, not that I espouse Wiki but they were the only time-line source I could Find: CDC investigation A Centers for Disease Control and Prevention (CDC) task force first met in June 2006.[29] In July 2006, Dan Rutz, MPH, a communications specialist for the CDC, said, "We're not ready to concede there's a new disease, but the volume of concern has stepped up because a lot of people are writing or calling their congressmen about it."[30] By August 2006, the task force consisted of 12 people, including two pathologists, a toxicologist, an ethicist, a mental health expert and specialists in infectious, parasitic, environmental and chronic diseases.[31] In May 2007, KGW-TV Newschannel 8's Laural Porter asked Rutz if he had any information about the nature of the fibers. At that time Rutz said, "None. We don't know. We haven't studied them in a lab yet. There is nothing to imply there is [an infectious process], but our mind is open to everything, including that remote possibility." Since then, the CDC has launched a funded study (see below) that will include further examination of fibers taken from Morgellons lesions by the CDC. In June 2007, the CDC opened a website on "Unexplained Dermopathy (aka 'Morgellons')".[10] By November 2007, the CDC had announced an investigation process, stating that, "The primary goals of the investigation are to better describe the clinical and epidemiologic features of this condition and to generate hypotheses about possible risk factors."[10] Kaiser Permanente in Northern California was chosen to assist with investigation, which will begin when the scientific protocols and review board structure have been prepared and approved. Investigators will report on the geographic distribution of the illness and estimate rates of illness in affected communities. The investigation will involve skin biopsies from affected patients and characterization of foreign material such as fibers or threads obtained from patients to determine their potential source.[10][32] In January 2008 it was reported that CDC was enlisting the aid of the U.S. Armed Forces Institute of Pathology and the American Academy of Dermatology "to conduct 'immediate' and 'rigorous' research."[33] Following a mailing campaign coordinated by the Morgellons Research Foundation in which "self-described sufferers clicked on the foundation Web site and sent thousands of form letters to members of Congress,"[2] the CDC, in conjunction with Kaiser Permanente's Northern California Division of Research, launched a study of the unexplained skin condition known as Morgellons. A press conference was held on Jan 16, 2008, with Michele Pearson, principal investigator for the CDC, and Joe Selby, Director of Kaiser Permanente's Northern California Division of Research.[34] During the press conference, Pearson stated: "What I can tell you is real is the suffering that these patients are experiencing. I cannot characterize this as a syndrome, as disease. I can tell you it's an unexplained illness." Clinical examinations for the study will be done in Oakland, California. From here: en.wikipedia.org/wiki/Morgellons#CDC_investigationThanks for the info dc Karen
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Post by ctbarb on Nov 6, 2009 0:37:16 GMT -5
And not to mention the thousands of telephone calls made to the CDC asking for guidance, help and medical assistance as to how to treat this disease. They are just leading us down the garden path AGAIN! This is just another stall tactic...guess they haven't got all of their answers defined - or better yet - agreed upon which one of their storylines we will swallow!!! The sad part of all this, is that we will have to follow the guidelines they set forth...whether we like it or not. I can see the way the wind is a blowin'! Gee, I wonder if the new healthcare package will cover all of our treatments for something they still don't know what it is? ? Perhaps we can ask President Obama??? Truly disgusted, ctbarb
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Post by Acacian Immolation on Nov 6, 2009 6:02:02 GMT -5
relax there's still 26+ more days of November. They said they'll release the info once they're done analyzing the data .. in Nov.. this is an update to them doing exaclty that. When Nov is through we will either have that data or not have that data.
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Post by dc10801 on Nov 6, 2009 14:34:34 GMT -5
relax there's still 26+ more days of November. They said they'll release the info once they're done analyzing the data .. in Nov.. this is an update to them doing exaclty that. When Nov is through we will either have that data or not have that data. "The panel has said that it will submit its report as expediently as possible"...that right there is not too assuring that this will be done in November. I fear the "panel" is nothing more than a group of contractors who managed to get another three or six month extension while we sit here suffering. C'mon this study was supposed to last 1 year...it's going on 2.
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Post by rhorn2006 on Nov 6, 2009 15:02:43 GMT -5
Now guys,,, hold on a second here!! This may not be worth getting worked up over, in fact it might be exactly what we were hoping to hear.. (CDC Updates,, November 5, 2009............. On Wednesday, November 4, 2009, the following statement (Preliminary Report on Progress of External Peer Review of CDC's Unexplained Dermopathy Project to the CCID Board of Scientific Counselors was presented to CCID’s Board of Scientific Counselors (BSC) meeting. The statement describes the External Peer Review Panel's process and progress in developing a preliminary report for CDC. The panel met in September to review CDC's Unexplained Dermopathy Project. Because this panel was convened only recently, the panelists need additional time to finalize their recommendations. The panel has said that it will submit its report as expediently as possible once it has completed its task of reviewing all aspects of the project that it was charged with reviewing. CDC will provide that report to the BSC members and post it online when it becomes available to us)........ <end> There are a few "key points" to pay attention to, noted in that statement, that sound pretty darn good to me!! 1 ) The panel met in September to review CDC's Unexplained Dermopathy Project. Because this panel was convened only recently, the panelists need additional time to finalize their recommendations. >>> They "met in September",,, "convened only recently",,, stating they "need additional time to finalize their recommendations" .... Meaning that: They have already put some degree of time into looking it over, and saw the need to state "needing "more time" before creating a final report that will be released to the public.. Most likely the interim time is being used to gather answers to all the odd finding they have no clue about how to report on!! If they could call there conclusions "simply a mental disorder" they would not need additional time to evaluate anything,, they would have just announced "its DOP folks" the day after reading the findings!! There saying that they found a very complex and confusing medical condition, they need additional time to understand enough to create a final report for the public's view... The way I read the CDC's November 5th statement,,,,,,,,,,,,, They have found a complex medical condition, they have no clue how to address or report,, one that they have ignored for over 10 years,, allowing thousands of people to get,, have no way to prevent or treat,, and may even be highly contagious!! With that being there conclusions,,, they would have to first understand what they were looking at, then re-convene and try to figure out how to "put that into words" without causing a world wide public panic!!! The need for additional time would be expected because "there is a lot to it" and no matter how its worded, the report will be seriously upsetting "not because it's just DOP and there jerking our chains by stalling" It would have taken them less than an hour to review and announce Morgellons as being "DOP" if that was what they found,,, putting an end to the whole mess once and for all.. Also keep in mind,,, they clearly state there "time extended study" as being "finished" and in the hands of the board only awaiting there "final report for public release" if the news is going to be serious, stalling time on there part has become very limited!! I would expect "as the CDC has stated" a public report of findings some time in December,, because it is serious and cant wait any longer......... Just my take on it.. Chins up campers,, this seems like good news and the end of a long wait for us in establishing Morgellons as a medical condition!!
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Post by toni on Nov 6, 2009 15:25:10 GMT -5
Acacian and Rhorn,
I sure agree. Had Morgellons been deemed DOP, there would have never been all the institutions involved as they've had, nor the time it's taken. It would have been a slam dunk deal. Open and close book.
That's not what's happening. They're just getting their ducks in a row (it appears) imho too.
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Post by toni on Nov 6, 2009 15:28:41 GMT -5
This is what makes me believe it's contagious or where WE can get help.
The last paragraph on their "announcement" says:
We are currently analyzing the data collected in the study.
When data analysis is complete and results of the study are available, the findings will most likely be published in a peer-reviewed scientific journal and disseminated through other channels, to CDC’s public health partners, such as State and local health departments and medical societies, and through this website.
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Post by toni on Nov 6, 2009 15:34:24 GMT -5
Well...the more I chew on it - maybe that's not what it means. (what I said just above) about where we can get help or the contagious aspect of it.
It's looking more like THEM (CDC) just letting us ALL know "how" they're handling the facts, and what they're doing with it - who it's being distributed to...and it looks like ALL medical entities.
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Post by chaosonline on Nov 6, 2009 16:16:14 GMT -5
What about #5: 5. What findings can be communicated to the public, medical community, and stakeholder community?
Can anyone tell what findings about any disease can't be communicated to the public? Like do they withhold findings on Polio or Cancer or Thyroid Disease? Or do they mean we aren't intelligent enough to understand some of the findings? Also, who exactly is the stakeholder community? Is it those of us with this disease? I would think so but I'm not sure.
Karen
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Post by rhorn2006 on Nov 6, 2009 17:33:28 GMT -5
What about #5: 5. What findings can be communicated to the public, medical community, and stakeholder community? Can anyone tell what findings about any disease can't be communicated to the public? Like do they withhold findings on Polio or Cancer or Thyroid Disease? Or do they mean we aren't intelligent enough to understand some of the findings? Also, who exactly is the stakeholder community? Is it those of us with this disease? I would think so but I'm not sure. Karen There not allowed to say anything extreme enough to "incite public panic" that will effect basic social services "in any way" or it's considered to be a "threat to national security"!! Therefor what is released and made accessible to the public sector must be "truthful and informative" but "very carefully worded" and in layman's terms,, in order to avoid public panic... A much more in depth, to the point version, medically complete and essential for proper diagnoses and treatment will be disclosed through more controlled channels and written "in medical terminology" so most of us wont get it enough to get panicked over....
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Post by camv35s on Nov 6, 2009 21:01:13 GMT -5
regarding the cdc----http://www.whale.to/vaccines/ploy5.html in order to get to this site erase your address bar and copy this and paste it in the address bar , sorry never seen this happen before ,regards camv
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Post by dc10801 on Nov 25, 2009 19:48:25 GMT -5
so i guess this was it?
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Post by bannanny on Nov 25, 2009 20:27:35 GMT -5
I dunno... sometimes I think it might be good on our behalf that they haven't released all the documents yet. It tells me they're having quite a hard time trying to figure out how to put it best. Try to be patient guys... and have a happy Thanksgiving. After all, we have Dr. Abbott on our side now!
hugs ~~ bannanny
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