Lyme Disease Review Panel Hearing WEBCAST July 30, 2009, 8:00 AM--5:00 PM The Infectious Disease Society of America (IDSA) Lyme Disease Review Panel is hosting an all-day hearing as an opportunity for patients, physicians and scientists to present information relevant to the 2006 IDSA Lyme Disease Guidelines. In-person attendance at the hearing is by invitation only. However, the hearing is being broadcast live, in real-time via webcast from the IDSA Website (www.idsociety.org/lymedisease.htm) and will be archived on the web for viewing at your convenience. Attending the webcast is easy! Click here to ensure well in advance of the hearing that your computer meets the technical requirements needed to view the webcast. If you require technical assistance, please e-mail, or call the help desk at: 1-877-867-7300. On July 30, at 7:40 AM EDT, the virtual doors will open for registration. Following registration, you will be connected to the webcast which will start at 8:00 AM EDT.
Posted by Tincup (Member # 5829) on :
Thanks jb for sharing that and keeping up with the activism stuff. Good job!
Here is a press release... from LDA, TFL and CALDA..
CALDA, LDA and TFL Press Release on IDSA Hearing
CALDA, the national Lyme Disease Association and Time for Lyme have issued a joint press release regarding the IDSA Lyme review hearing, which is schedule for July 30th in Washington D.C.
The release highlights the growing opposition to the IDSA guidelines, the importance of acknowledging the full spectrum of science in Lyme disease, and the importance of permitting clinical judgment and treatment options for patients.
Concerns are also raised about the current process, which Attorney Lorraine Johnson points out is not impartial because IDSA controls the process and has selected both the panel members and those who may present before the panel.
Of critical importance is that fact that no physicians who treat chronic Lyme disease were selected to sit on the panel. The testimony will be aired live over the internet on July 30th.
Is it true that registration is required and you have to apply to listen? This seems to be contrary to the spirit of the agreement with the AG. Just another dirty trick from those stinkers.
Posted by northstar (Member # 7911) on :
Twenty minutes for a registration time for the world to log on and listen.....I see a system crash!
Also, I would like to run the test, but the IDSA link to test is in a pdf. On my computer, I cannot click on a pdf to access a link (the test). Does anyone have a suggestion?
There is a discussion in another forum about this .....they are going to install something on the registrants computer.......
[ 07-24-2009, 03:00 PM: Message edited by: northstar ]
Posted by bettyg (Member # 6147) on :
IMPORTANT .... READ ENTIRE POST !!!! ********************************
Sent: Thursday, July 23, 2009 11:43 AM Subject: IDSA Video of Hearing
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.
PJ Langhoff,
BETTY'S NOTE: author of THE BAKER'S DOZEN, junk science, all about IDSA refutting their comments and of IT'S ALL IN YOUR HEAD. 3 BOOKS plus other lyme books!!!
Posted by Tincup (Member # 5829) on :
The IDSA's Public Hearing- Less Public by the Hour
The IDSA's hearing room is by ``invitation only'', which is already unacceptable to those who would like to attend in person.
To add insult to injury, those wishing to listen to the proceedings are being made to jump through a series of unnecessary hoops first.
The IDSA selected a service that requires two pieces of software to be installed on your computer (Windows Media Player and Microsoft Silverlight).
Concerns are that spyware can be downloaded during this installation process.
Major concerns have also been raised about being required to register prior to the event and the fact the registration process won't open until 20 minutes before the hearing is actually scheduled to begin.
Can thousands of people world wide register in that short time period without knocking out the system?
And why are we required to share our personal information with the IDSA in the first place?
If anything goes wrong the morning of July 30th, the IDSA recommends you send your email address and phone number to them and their ``experienced technical support staff will do its best to contact you ... within 24 business hours.''
This is simply not acceptable.
If the IDSA refuses to allow interested people to attend the hearings and also places all of these conditions on your ability to access a "public hearing", then the Connecticut Attorney General's office should make arrangements to broadcast the hearing live, tape the proceedings and provide everyone access without having to register.
What can you do?
Contact the IDSA and the Connecticut Attorney General's office today and let them know that you want the hearing to be accessible to everyone on the internet- with no software downloads, no registration requirements and no other restriction on viewing or using the information.
Or call his office on Monday: (860) 808-5355
Posted by Rick Laferriere (Member # 12644) on :
I wanted to add here that you do not have to register to watch the webcast of the hearing July 30th.
IDSA sends you to the website of the webcast provider, you-niversity.com/ and you can test you current computer's software to see if you have all the necessary plug-ins and whatnot in order to successfully view the webcast.
quote:Please enter your name and email address so we will be able to assist you if needed.
Bold text mine.
You can run the test without giving up any personal information.
I agree that it's sloppy to ask for this info without any privacy policy. Who gets the data? You-niversity.com or idsociety.org? What will they do with it?
But, I don't see anything at this point that mandates giving up your name and email in order to watch the webcast.
Rick Laferriere
Posted by Melanie Reber (Member # 3707) on :
Thanks Rick! Posted by sizzled (Member # 1357) on :
My computer was unable to install 'Silverlight'.
Is there another way to get access?
TIA.
Posted by Tincup (Member # 5829) on :
Siz...
Forget that you don't have the silver thing and just try it.
I was unable to do Media whatever.. it wouldn't download after multiple tries.... and I didn't have it...
But when I ignored that part I was able to see the sample video by following the rest of the steps.
Hope that helps.
Posted by sometimesdilly (Member # 9982) on :
silverlight didn't download, neither did the media player version that site insisted i needed, and there was no way to bypass that and hit play, since a play button did not show up.
persoanlly, i strongly recommend everyone take basic security measures before trying these downloads.. make sure you have virus protection and firewalls, and after you see the idsa video --if you ever do-- close down your browser, erase your cache, run a virus scan, and turn off/restart your computer before you do anything else on your puter.
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