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Post by dc10801 on Sept 30, 2009 16:07:10 GMT -5
In case you don't subscribe to CDC: On September 24, 2009, CDC convened an external review panel made up of experts from the fields of dermatology, infectious diseases, public health, and mental health which examined the study activities to date and provided advice on future activities. The panel provided recommendations and guidance to CDC about analyses they think should be conducted on the data. A summary of the findings of the peer review panel will be presented to CDC’s CCID Board of Scientific Counselors in November 2009 and will be made available on this website. In addition, results of this study 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. Full version here: www.cdc.gov/unexplaineddermopathy/investigation.html
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Post by Sidney on Sept 30, 2009 17:05:44 GMT -5
I don't see a big rush to reply to this announcement, so I'll just plunge in and make a comment.
Well, boys and girls, I guess it's better than a hack in the Butt with a Hatchet.
At least, it's something.
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Post by bessie on Sept 30, 2009 17:25:51 GMT -5
Unexplained Dermopathy (also called "Morgellons")Unexplained DermopathyGeneral Information CDC Investigation More Related Links National Center for Zoonotic, Vector-Borne, and Enteric Diseases CDC Investigation Also Available in: CDC Investigation on Unexplained Dermopathy [PDF, 132 KB]Given the complexity and number of diverse symptoms reported by people who experience this unexplained skin condition, CDC is undertaking a measured and thorough scientific investigation which offers the best chance for finding useful answers. CDC is conducting this study along with Kaiser Permanente’s Northern California Division of Research. The study was designed and is being led by CDC.
The primary goals of the study are to learn more about who may be affected with this condition, the symptoms they are having, and what factors may contribute to the condition. The study involves: Determining the clinical and epidemiologic features of this condition; examining skin biopsies from affected patients; characterizing foreign material such as fibers or threads obtained from persons with the condition; and estimating rates of illness among the study population.
Frequently Asked Questions What is the current status of the study? How will CDC communicate information about this condition and the findings from the study? Does CDC plan to expand the study to other locations or include other persons who may be affected with this condition? Why did CDC select Kaiser Permanente as the partner for the study? Who was eligible to participate in the study? May I send samples to the CDC laboratories for confirmation of this condition? Can you advise on the steps that I should take to report this condition to CDC? If I have more questions about the study, what should I do? What is the current status of the study? Study recruitment, examination of participants, and collection of samples has been completed. We are currently analyzing the data collected.
How will CDC communicate information about this condition and the findings from the study? On September 24, 2009, CDC convened an external review panel made up of experts from the fields of dermatology, infectious diseases, public health, and mental health which examined the study activities to date and provided advice on future activities. The panel provided recommendations and guidance to CDC about analyses they think should be conducted on the data. A summary of the findings of the peer review panel will be presented to CDC’s CCID Board of Scientific Counselors in November 2009 and will be made available on this website.
In addition, results of this study 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.
In December 2008, CDC mailed letters to state medical associations, in case they and their members received inquiries about this condition, in order to provide an update about CDC’s activities. Letter from CDC to medical association [PDF, 45 KB] We will provide an update to these organizations as well, when the study results are available.
Why did CDC select Kaiser Permanente Northern California as the partner for the study? There are several factors that led CDC to select Kaiser Permanente Northern California as the partner in this study. First, this condition is thought to be rare; therefore, CDC sought a location and an organization that would likely have an adequate number of affected persons to be able to conduct a careful investigation. Kaiser Permanente Northern California is located in a geographic area where self-reported cases of this condition are concentrated. Second, Kaiser Permanente has a membership that comprises a large proportion of the population in the Northern California area, thereby allowing estimation of rates of the condition in the population. Third, Kaiser Permanente has electronic health records that allowed a systematic method of identifying persons who may have this condition.
Who was eligible to participate in the study? Participant selection followed a set protocol, and not all persons who identified themselves as having signs or symptoms of this condition were eligible to participate in the study. Eligible participants were required to live in the Northern California area, were at least 13 years old, had been a health plan member of Kaiser Permanente Northern California from July 2006 through December 2007, and had compatible signs and symptoms of the condition as described in the study protocol.
May I send samples to the CDC laboratories for confirmation of this condition? CDC is not able to accept specimens or samples for testing, and we are not aware of any public health labs that are performing tests specifically related to this condition. Persons who believe they may suffer from this condition should contact a licensed healthcare provider for evaluation and medical care.
Can you advise on the steps that I should take to report this condition? "Morgellons" is not a condition that is reportable. Persons who believe they may suffer from this condition should contact a licensed healthcare provider for evaluation and medical care. CDC is not a clinical facility and does not provide clinical care or consultation to patients.
Does CDC plan to expand the study to other locations or include other persons who may be affected with this condition? The current study was limited to persons living in Northern California and to persons who met the study's eligibility criteria. Decisions regarding future studies will be determined based on the findings of this study and on recommendations from the peer review panel.
If I have more questions about the study, what should I do? Inquiries regarding this study can be sent to: Email: morgellonssyndrome@cdc.gov or Phone: 404-718-1199 (Pre-recorded message with voicemail)
At this time, we are not able to provide individual responses to each inquiry, but our public inquiry e-mail and phone line are checked regularly. Answers to frequently asked questions will be posted to this web site, and this web site will be updated with new information as it becomes available.
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Post by bannanny on Sept 30, 2009 18:17:44 GMT -5
Yep Sid... at least it's something. I wonder who they convened together on the 24th... I think their names should be made public myself.
Thanks dc10801...
love ya's ~~ bannanny
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Post by rhorn2006 on Sept 30, 2009 19:19:19 GMT -5
November 2009??? That must have been a type-o...... I think they meant to say "November 2019"
I still don't understand what in the heck mental health professionals have to do with a fact based medical research study... Has "psychology" suddenly become an actual "fact based medical science" and they have been keeping it a secret??
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Post by Jill on Sept 30, 2009 19:34:19 GMT -5
2019 -If we are lucky, Rhorn & Kmarie! lol Speaking of lucky and the CDC- here's another group of lucky folk: www.cdc.gov/nchhstp/newsroom/AAAPressRelease.html Innovative Partnership with Kaiser to Increase Participation from Media
To encourage broad use of Act Against AIDS campaign materials and messages, CDC is partnering with the Kaiser Family Foundation – a leader in health policy and communications – to enlist widespread participation in the campaign from the media and entertainment industries. The initiative will establish a coalition of media partners who are committed to increasing knowledge of HIV/AIDS in the United States. Industry partners will be encouraged to use the PSAs, and to undertake their own additional efforts. “The media and entertainment industries are powerful forces in breaking through complacency and focusing national attention on important issues,” said Drew E. Altman, Ph.D., President and CEO of the Kaiser Family Foundation. “Kaiser is pleased to partner with the Obama Administration and the CDC to help build and sustain a coordinated national media response to HIV and AIDS in the United States with particular focus on the most impacted communities.”
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Post by ctbarb on Sept 30, 2009 22:33:23 GMT -5
Don't they ever get tired of shoveling??? I think we ought to send Obama a pair of Wellies!!! He's sure gonna need 'em! Wonder how many folks they can get in that bed??? Makes you wanna upchuck... “The media and entertainment industries are powerful forces in breaking through complacency and focusing national attention on important issues,” said Drew E. Altman, Ph.D., President and CEO of the Kaiser Family Foundation. “Kaiser is pleased to partner with the Obama Administration and the CDC to help build and sustain a coordinated national media response to HIV and AIDS in the United States with particular focus on the most impacted communities.”
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Post by ivanhole on Oct 1, 2009 0:49:28 GMT -5
In bed is right...Altman or someone at Kaiser must be doing someone the CDC. What's with those two? They share a lot of sentences in print these days. It seems where you see one, you see the other - - something is rotten in the state of Georgia...
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Post by gezunked on Oct 1, 2009 3:54:30 GMT -5
throwing in a few comments
DC10801: thanks for noticing and posting... if nothing else it's great to have a publication date for this "study".
Rhorn: I agree 2019 is more likely to be closer to when we get some real answers about Morgs.
IMHO this study is not about Morgellons it is about protecting Psychiatry by attempting to validate Delusions of Parasitosis. Morgellons is an interesting phenomenon on so many levels. It is important for medicine to debunk Morgellons because Morgellons is a can of worms for the medical profession. If proven to exist it also proves the medical industry to be unethical, incompetent, abusive and dishonest. Because morgs has been described as DoP for so long, it is very important from the CDC/Kaiser point of view, to establish if the condition is delusional. In the perfect world the psychiatrist on the external review panel would not be required to input into the discussion because Kaiser and the CDC should have unequivocal evidence of this novel condition. But then, 15000 people at least have been going to doctors, dermatologist, infectious disease experts etc for how many years? How many times a year? And all these experts have never managed to find any evidence? Presumably the good people from Kaiser and the CDC gained their expertise in the same institutions that churned out the legions of incompetent medicos we have been collectively dealing with all this time.
Kmarie: The CCID reference is interesting. I guess it shows that the Morgellons is being considered in this study as infectious. It appears the CCID's role in this was to advise on the nature of the study and to do an additional review of the study itself.
Im not really sure of the chronology, but I think the study was conceived and commenced under the Bush administration and has been finalised under Obama. While I think the attitudinal shift Obama has brought to government has helped get the study finalised, I suspect the study itself, setup under the Bush autocracy, was designed to fail.
"As a child's silent prayer my hope hides in disguise"
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Post by imblownaway on Oct 1, 2009 10:44:01 GMT -5
I ant give up hope its all we have but I am outraged. They are still saying "Morgellons" is not a condition that is reportable. yeah that way they can deny knowing how widspread this is. But yet any little sniffle can be reported. and this statement Study recruitment, examination of participants, and collection of samples has been completed. We are currently analyzing the data collected. sounds like a stall tactic to me. analyzing the data could take decades. and not one hint of what they know so far. not one hint of any urgency. they are too busy trying to cram a dangerous vaccine down us. I am angry because I am scared I guess. The fear of knowing they are not to be trusted.
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adill
Junior Member
Posts: 70
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Post by adill on Oct 2, 2009 11:31:42 GMT -5
I dont think I am even able to hope anymore...I know that the damage done from this is not reversable and after waiting so long for help and the thought of the world laughing as I go down really hurts.
I could handle the loss of everything if I thought the next generation was going to get some help-for this I pray.
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Post by imblownaway on Oct 2, 2009 12:22:31 GMT -5
Adil
I know the young ones. Makes me feel so helpless and angry.
Faith When you feel all hope is gone. Hang on to faith.
Eph 6:12: For our wrestling is not against flesh and blood, but against the principalities, against the powers, against the world-rulers of this darkness, against the spiritual hosts of wickedness in the heavenly places.
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