ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
Re: the panel on July 30:
I have questions I have been meaning to ask:
So on July 30, the appointed panel will listen to a full day of testimony presented by both sides.
What happens next?
Does the panel meet to discuss what they have heard and formulate a opinion?
Does the opinion have to be agreed upon by all members of the panel? Or is there a majority vote on various issues?
How exactly are their findings going to be published?
And how long do that have to submit their findings and recommendations?
Will these findings be binding, or can the IDSA decide to discount anything that is in our favor?
And the dreaded question: What if the panel DOES side with the IDSA? What then?
Posts: 2275 | From NC | Registered: Oct 2000
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bettyg
Unregistered
posted
connie, please change dates to JULY 30 !!
here's other info....
Mac McDonald from www.lymeblog.com has brought up some points that we must consider:
Please contact Richard Blumenthal's office to request a separate, IDSA-independent video feed for the July IDSA hearing and here's why, as it is probably not part of the "agreement" reached between his office and the IDSA panel.
As it stands, people wishing to watch the upcoming hearing broadcast on the IDSA web site, must REGISTER on the IDSA site before they can listen to the broadcast.
And in order to watch their video, the IDSA site also requires us to download an application that is to be installed on our computers.
There is no privacy policy posted on the IDSA web site, and hence no assurance that the IDSA won't collect and "own" our personal information that it can use for its own purposes, especially under the federal post 9/11 Patriot Act legislation....and that the IDSA won't try to "own" the rights to the hearing it is broadcasting.
And there is no guarantee that the IDSA won't track and pursue Lyme patients and their physicians with this database, a very powerful database indeed.
The installment of "an application" of any sort, easily allows the embedding on our computers, of "spy" software which can record every keystroke we type, all the sites we visit (cookies) and whatever else is intended to be recorded or tracked.
In addition, you should be advised that anyone with your IP address and your name once registered can be used to find out where you live and much more information about you--by anyone.
All it takes is an IP address to find out where you live.
The collection of data in a powerful database such as that which will collect personal information about us as lyme patients, will allow the IDSA to keep track of all lyme patients and doctors registering, and collect whatever information they wish. And any time an application is downloaded, you don't know what is being placed on your computer, or what is being tracked, from cookies to keystrokes to email conversations!
Spy software does exist, it is as easily installed by opening a file, and there is no assurance that this is not being done-- nor is there a posted privacy policy that can be legally enforced!
By the way, Lyme advocacy groups that require registration on their sites to view the hearing may also be collecting personal information as well, although they don't require the downloading of an application---
so remember to check privacy policies on those sites before registering.
Personal information is being collected on any sites which require registration.
Don't think that it is not being collected!
Mailing and phone lists are a common thing in this day and age of electronics.
And in a paradigm where it is the "us against them" mindset, we must be diligent and demand a freedom of choice so that our privacy and rights are protected and ensured.
I think we should be asking Mr. Blumenthal's office for an independent site which will post the upcoming IDSA hearing FREE WITHOUT REGISTRATION and/or with a privacy policy which ensures that people's information, if they must register, will not be used anywhere else or sold or shared.
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Very thoughtful questions, Connie. I don't know the answers, though.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
I am a little surprised noone knows the answers to these questions. I think we are all interested in the potential impact of this hearing and it would be nice to know what happens next.
Certainly, we may come out of the hearing feeling like our story was told, but do we really know what will happen with this panel once the hearing is over?
Is this whole thing a joke and just to appease us, or is there potential for real change?
Posts: 2275 | From NC | Registered: Oct 2000
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quote: To assure that the review panel obtains divergent information, the panel will conduct an open scientific hearing at which it will hear scientific and medical presentations from interested parties. The agreement requires the hearing to be broadcast live to the public on the Internet via the IDSA's website. The Attorney General's Office, Dr. Brody and the review panel will together finalize the list of presenters at the hearing.
Once it has collected information from its review and open hearing, the panel will assess the information and determine whether the data and evidence supports each of the recommendations in the 2006 Lyme disease guidelines.
The panel will then vote on each recommendation in the IDSA's 2006 Lyme disease guidelines on whether it is supported by the scientific evidence. At least 75 percent of panel members must vote to sustain each recommendation or it will be revised.
Once the panel has acted on each recommendation, it will have three options: make no changes, modify the guidelines in part or replace them entirely.
The panel's final report will be published on the IDSA's website.
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
Since nearly all the panel members are IDSA clones, were chosen for that reason, don't look for any changes to be made. And the AG will not be able to do anything about it.
If anyone wants to read about the composition of the panel and the other conditions, there were plenty of threads discussing this in previous lymenet conversations.
The only hope for us, IMO, is for someone with deep pockets or a public-spirited well financed law firm to take these guys to court. Expose all the lies and dirty tricks in public. Cost the IDSA more money in legal fees, which is the only reason they settled with the AG.
Posts: 8430 | From Not available | Registered: Oct 2000
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
Thanks Shaz ..... I didn't think of looking on the AG's site.
I wonder if they can drag this out as long as they want? No doubt there will be plenty of negotiating behind the scenes once the hearing is over. I wish the panel could be "sequestered" after the hearing.
Let justice prevail! I am hopeful, but not optimistic.
Posts: 2275 | From NC | Registered: Oct 2000
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