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Post by kmarie on May 14, 2010 8:57:46 GMT -5
Does anyone know if this involves the "morgellons" meeting? Many of us were under the impression that "NEWS" would come in May. This was originally posted by Gezunked on the CDC sticky thread. I thought some feedback would be good from others to understand this. Thanks! and Thanks to you Guzunked for locating this information. -------------------------------------------------------------------------------- regulations.justia.com/view/172245/ DEPARTMENT OF HEALTH AND HUMAN SERVICES
Centers for Disease Control and Prevention Board of Scientific Counselors, Coordinating Center for Infectious Diseases (CCID) In accordance with section 10(a)(2) of the Federal Advisory Committee Act (Pub. L. 92-463), the Centers for Disease Control and Prevention (CDC), announces the cancellation of the May 2010 meeting of the aforementioned board. Due to unanticipated circumstances and scheduling conflicts, the board does not have the quorum required to convene. Contact Person for More Information: Leola Mitchell, Office of the Director, CCID, CDC, 1600 Clifton Road, NE., Mailstop K-74, Atlanta, Georgia 30333, e-mail fvp9@cdc.gov, telephone (770) 488-8366. The Director, Management Analysis and Services Office has been delegated the authority to sign Federal Register notices pertaining to announcements of meetings and other committee management activities, for both CDC and the Agency for Toxic Substances and Disease Registry. ------------------------------------------------ Modifying to change Thread Topic header to prevent confusion.
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Post by kmarie on May 14, 2010 10:01:13 GMT -5
Hi folks,
It seems I'm having some login problems and can't start a new thread, only add to others. I wanted to pass on an observation and some info about the CDC Morgellons investigation and this seems the next best place to do it.
I noticed tonight that the CDC Unexplained Dermopathy page says:
"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."
from: www.cdc.gov/unexplaineddermopathy/updates.html
but, the minutes of the BSC meeting of November 4-5, while prodigious, make no mention of that "Preliminary Report..." being presented to the BSC meeting at all. That's the observation.
BSC minutes: (someone please check) www.cdc.gov/maso/FACM/pdfs/BSCNCID/2009110405_CCIDBSC.pdf
The information is that I found a search results page that says the May 19-20 2010 meeting of the BSC has been cancelled. Due to "unanticipated circumstances and scheduling conflicts the board does not have the quorum required to convene." If it's cancelled who gets the prelim report and when? It looks legit but who can tell on the internet?
regulations.justia.com/view/172245/
If I'm duplicating old information, my apologies
All the best
Gezunked
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Post by jj on May 14, 2010 10:54:44 GMT -5
What kind of feedback are you looking for Kmarie?
Wasn't aware of any schedualed "Morgellons CDC meeting", only discussions of what was anticipated might take place by certain individuals.
JJ
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Post by jj on May 14, 2010 10:56:46 GMT -5
Gezunked
Sorry about your problems starting new threads. Weird. Can you pm me with more specifics so we can help?
JJ
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Post by rhorn2006 on May 14, 2010 11:15:27 GMT -5
More of the same ole CDC stall tactics....
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Post by ctbarb on May 14, 2010 11:47:27 GMT -5
Sounds like their "partners" aren't ready to dance yet! Don't hav enought "partners" to "partner" with!!! ...and a right and a left and swing your honey!
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Post by kmarie on May 14, 2010 12:39:22 GMT -5
This is what I was referring to when I posted "morgellons meeting" thinking that morgellons was to be discussed. CDC issues: the BSC, CCID advisory counsel meets 2 x year.
The next meeting is in May and it is felt that the big announcement will be then.
I called the CDC today and the meeting is May 19 and 20 in Atlanta, Ga.
Link Source: lymebusters.proboards.com/index.cgi?board=rash&action=display&thread=13724
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Post by gezunked on May 14, 2010 16:56:47 GMT -5
My big concern about all this is that the morgs study has to be presented to the CDC Board of Scientific Councellors (BSC). That board currently meets twice yearly and has cancelled their May meeting. This means the earliest opportunity for the Morgs study to get a public airing is now November this year. However, there is another problem. The CDC appears to be going through a big re-structure and big restructures can take a long time, and established Boards such as the BSC often get replaced, redefined and refocussed. My concern is that while we wait for the November meeting the BSC will disappear in the restructure and our Morgs study will become an orphan with no official body to accept it's report. I'm sure we all recall this 'one year' study was originally announced in June 2006 - four years ago.
Can someone in the USA call "Leola Mitchell, Office of the Director, CCID, CDC, telephone (770) 488-8366." and find out wtf is going on?
Thanks
Gezunked
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Post by toni on May 14, 2010 23:08:13 GMT -5
I'd written Leola Mitchell earlier today when I saw these posts, as I got curious too as to what's happening.
IF I receive a reply back, I'll sure post it.
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monika
Junior Member
Posts: 78
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Post by monika on May 15, 2010 22:10:22 GMT -5
Yes the meeting has been canceled. I found some more information to add that mabye the rest of you all did not know about the investigation. Apparently Kaiser did not have much hand in any research into Morgellons ...the issue was taken over by the US Army Dept of Pathology ....entirely. So that sounds like Kaiser didnt actually do any work on it...the Military took over ....yet the us Army of Pathology website makes no mention of it. They list all of the other research projects they are doing or have done but no mention of that. I found this info here :http://www.rumormillnews.com/cgi-bin/forum.cgi?noframes;read=165669
Something to make you go HMMM?
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Post by bessie on May 17, 2010 15:37:55 GMT -5
Kaiser was responsible for the collection of data and samples. In December of 2008, they turned everything over to the Army Lab. It appears that they did what they had to do and then turned it over to the BSC after about a year. That was six months ago.
Bessie
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Post by toni on May 18, 2010 8:18:08 GMT -5
I'd written Leola Mitchell earlier today when I saw these posts, as I got curious too as to what's happening. IF I receive a reply back, I'll sure post it. The other day I'd written inquiring about this, and this morn, I got a reply. Nothing new really that's encouraging, but it's a reply back.Dear Ms. ////////, Thank you for your e-mail to Ms. Leola Mitchell inquiring about the CCID Board of Scientific Counselors (BSC) meeting, which had been planned for May 19-20, 2010. Your e-mail was forwarded to this information desk for response. Unfortunately, that meeting had to be cancelled, because not enough members were available to meet a quorum, which is required under Federal Advisory Committee Act guidelines. We are hoping to schedule another meeting of the BSC in late 2010, and information about that meeting will be posted in the Federal Register when a date is finalized. Regarding your inquiry about CDC’s study on an unexplained dermopathy that some refer to as “Morgellons,” we will discuss with BSC leadership how best to bring the report of the external peer review of this project before the BSC. Separately from that external peer review report, we are currently analyzing the data collected in CDC’s epidemiologic investigation of this condition. 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 CDC’s website at www.cdc.gov/unexplaineddermopathy/. Sincerely, CDC Unexplained Dermopathy Team
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Post by jj on May 18, 2010 8:49:27 GMT -5
Yep,
Pretty much what they have previously stated. Thanks for doing that Toni. It's appreciated
JJ
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Post by toni on May 18, 2010 8:54:45 GMT -5
In regards to that email I received back this morn, HOPEFULLY in LATE 2010 as expressed above, they'll have enough members to quote ( meet the quorum ) so this can be discussed.
I guess I could come undone, "knowing we're all here, and everywhere suffering"....and because these people's schedules (don't permit) for them to have attended that meeting...we wait again.
Of course that's just speculation and assumption on my part, (because maybe they don't have all their ducks in a row) as far as the investigation goes, but, as by the letter read, it sounded as though (not enough people attended) - and that that is where the first step needed to be.
It's sort of "mixed messages" actually (the email received) from CDC.
I'll write again for them to clarify, because I'm not positive whether or not that meeting that was scheduled involved the discussion of Morgellons or not. (maybe it was just a meeting of other subjects?)
The reply back *the more I read it* is like there were two different subjects.
One being "JUST a meeting"....and then the other being a separate issue (morgellons).
See what I mean?
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Post by toni on May 18, 2010 9:10:11 GMT -5
okay, before (they) (CDC/BSC) etc get my feathers ruffled (by my assumptions) of WHAT exactly that meeting was about, I wrote them back just now (see below) for clarification. Dear Ms Mitchell or Unexplained Dermopathy Team, Thank you for your response below. this is just in reference to the email they'd sent, since I attached it back to them with my *question*. May I ask for something specific here, as I'm not completely clear, and I'd like to be. The meeting that was scheduled for May 19-20th was (as you stated) cancelled because "not enough people attended to meet a quorum", and I understand that part. Then in the following paragraph (Unexplained Dermopathy) is discussed in how this is currently *under investigation*. I am wondering ( if ) the meeting that had been cancelled for May 19-20 - had proposed to discuss the (Unexplained Dermopathy) *issue*? Or is that "still under investigation/study"....and had nothing to do with the May 19-20 meeting? Thank you for any light you can shed on this inquiry. My curiosity is needing sufficed.
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Post by jj on May 18, 2010 9:19:15 GMT -5
In regards to that email I received back this morn, HOPEFULLY in LATE 2010 as expressed above, they'll have enough members to quote ( meet the quorum ) so this can be discussed. I guess I could come undone, "knowing we're all here, and everywhere suffering"....and because these people's schedules (don't permit) for them to have attended that meeting...we wait again. Of course that's just speculation and assumption on my part, (because maybe they don't have all their ducks in a row) as far as the investigation goes, but, as by the letter read, it sounded as though (not enough people attended) - and that that is where the first step needed to be. It's sort of "mixed messages" actually (the email received) from CDC. I'll write again for them to clarify, because I'm not positive whether or not that meeting that was scheduled involved the discussion of Morgellons or not. (maybe it was just a meeting of other subjects?) The reply back *the more I read it* is like there were two different subjects. One being "JUST a meeting"....and then the other being a separate issue (morgellons). See what I mean? That's how I understood it Toni. Seperate subjects. I never thought the "CCID Board of Scientific Counselors (BSC) meeting" was exclusively a Morgellons meeting but that is only speculations on my part as well. I believe that "external peer review report" would be one of many different things brought to the table for discussion at a meeting like that. JJ
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Post by toni on May 18, 2010 9:25:21 GMT -5
Thanks JJ, And yes, I also (don't know) it's too much speculation in regards to that meeting. I didn't know if (Morgs) was going to be "one of the topics" of many, or the main topic, or none at all. So... I guess the best thing I could think of to have our speculation/assumptions answered was to write them back. Hopefully they'll reply back. Not that it does us any good, even IF the Morgs/dermopathy issue *was* going to be discussed - since it's been cancelled to a later date, and nothing is going to change that part, but to give us clarity - is about all it's worth. *another thought too, is IF it were going to be discussed, possibly that's a good sign too, that progress is progressing* because had it not been on the adgenda, then it's still in *study* - but then again this would be speculation/assumption on something else.
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Post by toni on May 18, 2010 9:36:44 GMT -5
Well...I just now heard my emails "ding"...and looked.
They sent me back the "generic CDC info". So...who's guess is what that meeting entailed - since specifics aren't going to be answered from them at this time.
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Post by jj on May 18, 2010 10:22:52 GMT -5
Thanks Toni This is what I originally did when trying to understand what was communicated up until this point. It appears Gezunked did the same and provided some links (thank you Gezunked). If one reads the notes from the Nov. 4th & 5th CCID/BSC/CDC meeting one can determine what these meetings tend to entail. www.cdc.gov/maso/FACM/pdfs/BSCNCID/2009110405_CCIDBSC.pdf That's what I did and that's why I felt how I did. The policies, procedures, glossaries and definitions are there (on the CDC website) it's just time consuming weeding through it all. Thanks again JJ
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Post by kmarie on May 18, 2010 10:57:01 GMT -5
What kind of feedback are you looking for Kmarie? Wasn't aware of any schedualed "Morgellons CDC meeting", only discussions of what was anticipated might take place by certain individuals. JJ Due to the vague report about the phone call that Sunny made to the CDC, clarification was the desired feedback. Thank you Gezunked for bringing this topic to my attention. Thank you JJ for your contribution and clarification. Thanks to everyone else as well!
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