When is a public hearing not public—the sequel?
The IDSA settlement agreement calls for an open public meeting which must be aired live over the internet. I have serious concerns about the restrictions the IDSA is imposing on people who want to watch the hearings and am discussing these with the Connecticut Attorney General’s office, but meanwhile I want to provide you with information so that if you want to watch you are prepared.
The thought of the live on the internet was simply that people would click a url and be able to watch. The IDSA has placed a number of barriers to access:
People are required to have two pieces of software in order to access the hearing, Windows Media Player and Microsoft Silverlight. While some people may have this software on their systems, others will need to download it. You-niversity, which is the service providing the webcast, has a test you can run to see if your computer can view the site. In order to run the test, you must provide a name and email. You can run this test today and should do this to make sure you will not have any problems.
Apple computers may not have Windows Media Player installed and Microsoft Silverlight is a relatively new software program. Technical support at You-niversity told me that their webcasts do not work with Microsoft Chrome browser, but will work with Firefox and Safari. You-niversity.com websites says that it does not work with Apple, but a friend went through the process and got it working. If you have technical problems, they can call their support number (1-877-867-7300) and wait for a call back. Mine took ½ hour to call back. Do not put this step off. You do not want to be calling the day of the hearing when the phone banks may be overloaded.
People must register for the event. This requires disclosure of private information. I assume this will be a name and email, but it could be more. I was told by you-niversity technical support that registration it is not “required” by their system, but IDSA is requiring it.
The registration period is 20 minutes before the event and begins at 7:40 am EST. From response to my survey, I would say we may have 3,500 people or more trying to register for this event. I do not know whether their system can handle this volume of people in that time frame, but I have serious concerns.
Schedule for the event on July 30th :
7:40 On-line registration
8:00 AM Welcome
8:15 AM Presentations Begin
11:45 AM Lunch Break
12:30 PM Presentations Resume
4:50 PM Final Remarks
5:00 PM Conclusion
Presenters and order of presentation:
1. Tina Garcia, Lyme Education Awareness Program Arizona (L.E.A.P. Arizona, Inc.), Mesa, AZ
2. Lorraine Johnson, JD, MBA, California Lyme Disease Association (CALDA), Ukiah, CA
3. Daniel Cameron, MD, International Lyme and Associated Diseases Society (ILADS), California
4. Phillip Baker, PhD, American Lyme Disease Foundation (ALDF), Bethesda, MD
5. Ben Luft, MD, The State University of New York, Stony Brook, NY
6. Allison Delong, ILADS, Providence, RI
7. Barbara Johnson, PhD, Centers for Disease Control and Prevention, Fort Collins, CO
8. David Volkman, MD, Nissequogue, NY
9. Sam Donta, MD, Falmouth, MA
10. Eugene Shapiro, MD, IDSA & Yale University School of Medicine, New Haven, CT
11. Brian Fallon, MD, Columbia University Medical Center, New York, NY
12. Sunil Sood, MD, Schneider Children’s Hospital at North Shore, Manhasset, NY
13. Ken Liegner, MD, ILADS, Armonk, NY
14. Allen Steere, MD, Massachusetts General Hospital & Harvard Medical School, Boston, MA
15. Steven Phillips, MD, ILADS, Wilton, CT
16. Arthur Weinstein, MD, Washington Hospital Center, Washington, DC
17. Raphael Stricker, MD, ILADS, San Francisco, CA
18. Gary Wormser, MD, IDSA & New York Medical College, Valhalla, NY
- July 25, 2009 at 9:59 am
My system checks out but with the disclaimer that when volume of participants is high, webcast video may be lost but volume will continue. I had these very same thoughts when this on-line scenario was first announced. Any time I have participated in a webcast where volume of participation is high, the video does drop out and I belived this will be the case here as well. I hope everybody will try hard to get in and that will be a statement made when the system is overloaded. I hope Mr. Blumenthal and Dr. Brody will be active participants to ensure a fair outcome is achieved.
- July 25, 2009 at 9:33 pm
"Technical support at You-niversity told me that their webcasts do not work with Microsoft Chrome browser, but will work with Firefox and Safari."
The browser that does not work with it is Google Chrome, not Microsoft Chrome. Microsoft Internet explorer also will work.
- July 25, 2009 at 10:10 pm
I am shocked and appalled at what kind of deceitfulness I am witness to.
First, there is an exclusion of treating LLMD's.
I've been working with computers for 20+ years, and I do not see a way for my PPC Mac 10.4.11 to view this hearing.
Please press forward in haste to allow for an inclusive webcast.
Tomorrow, I will call the support number, and see whether I can get this running on PPC, but I doubt it.
Best wishes, and thank you Lorraine,
- July 26, 2009 at 6:09 am
Why is the IDSA only allotting 20 minutes for thousands of people to register? If the system overloads and can't handle everyone trying to log on, I assume this means those of us unable to register due to system overload or technical problems won't get to see or hear the broadcast. I thought this testimony was supposed to be available for the public to hear. If the IDSA wanted names, information and email addresses (i.e., for us to "register"), they could have posted this requirement on their website page months ago and given us all plenty of time to register…days, weeks, even months. Allotting 20 minutes for such a process is ridiculous.
I also question the motive in requiring registration to begin with. What sort of information are they collecting? How will this info be used? Could doctors, researchers or politicians who register to watch be contacted? Or could this be a way of limiting/controlling the number of people who may access this hearing? And since the Infectious Disease Society is on one side of this battle, is it fair that they will collect this information at all? If people must disclose their identity to them, the IDSA should be required to share this information with all interested parties, (ILADS and Lyme groups), if this is truly to be an honest procedure.
The testimony is supposed to be archived and available for a full year on the IDSA's website. Will this registration stipulation also apply in order to watch the archived testimony? And why is this testimony only being archived on the IDSA website to begin with instead of on an independent organizationâ€™s website? Isnâ€™t this a case of the fox minding the henhouse? If this is to be an open, unbiased process, then if the testimony is archived on the IDSA website, it should also be made available on the ILADS website to ensure fairness.
In a controversy shrouded with secrecy and suspicion, the only way to clear the air is to allow open, honest public debate. This means allowing anyone, anywhere, at any time to listen to any and all of the testimony about Lyme disease, without requiring viewers to disclose their names and other private information. In the movie, Under Our Skin, one of the IDSA Lyme treatment guidelines authors claimed they are not going to ignore good science, but that the science isnâ€™t there. If the science isnâ€™t there, then what are they afraid of? Allow the testimony to be broadcast far and wide to anyone who cares to listen.
- July 26, 2009 at 6:47 pm
OK Boyz and Gurlz,
I just got off the phone with technical support.
I've previously been unable to run Silverlight on my Apple PPC computer running OS 10.4.11, and this was no exception.
Here is a workaround for those having difficulties getting the webcast to run.
Windows Media Player:
Find "Windows Media Player" on your computer (it will be in your programs (or applications if you're on a Mac) folder. If you can't find it, do a "Search" function and type in "Windows Media Player" (no quotes)
if you do not have Windows Media Player installed, then download it here:
Follow the instructions to install Windows Media Player.
Open Windows Media Player. Under one of the menus there will be an option, "Open URL" (or something to that effect).
Type in this direct link to the test:
You should see the broadcast stream after a few seconds (or longer, depending on the speed of your computer).
For those of us who use QuickTime, and prefer not to use Windows Media Player:
Launch QuickTime. Under the File Menu, select: Open URL
Type in this direct link to the test stream:
If nothing happens , the stream does not play,Â or you get an error message stating that this media type is not supported,Â you will need to install "Windows Media Components for Quicktime", which is called, "Flip4Mac":
Re-launch Quicktime, and as before: Under the File Menu, select: Open URL and type in:
If this still doesn't work for you, contact technical support.
I have been assured by the technical support rep that a separate direct link to the webcast will be provided on the IDSA website for those of us who cannot use Silverlight. This alternate link should be clearly labeled, "For those who cannot run Silverlight or who are having difficulties accessing the webcast through their browsers", or something to that effect.
I've also been told that the address for the direct link will be written outÂ with instructions to "copy and paste" for those of us whose media players do not launch directly from a link.
If this is the case for your browser, or you're having difficulties:
Copy the address for the direct link to the webcast stream.
Launch Windows Media Player or Quicktime Player – the player which you successfully viewed the test stream.
In the "Open URL" dialogue box, paste the address to the actual webcast.
- July 27, 2009 at 10:18 am
This scenario of 20 minutes tolog on is absolutly going to fail- the numbers will be much higher the the said 3500. What did they do, a gallop poll? They have set this up to fail. It happens all the time, and this is the IDSA, so no suprise here. Having worked in the IT world for years, this is a complete joke!
- July 27, 2009 at 10:50 pm
I would encourage everyone to call the You-niversity Technical Service Number on the ID society link: 1-877-867-7300
or submit an email to the address they have provided at: http://www.idsociety.org/WorkArea/showcontent.aspx?id=14974
for the purpose of expressing the valid concern that the registration timeframe is of great concern.
It was originally stated that registration would begin 3 days prior to the actual event. This is noteworthy.
Praying for you Lorraine!
- July 28, 2009 at 3:54 pm
This is for Lorraine Johnson. I have in my possession legal documents proclaming
lyme disease awareness needs. Govenors and mayors of these towns and states, are proclaiming the need for education, physician education and declaring the knowledge of the trauma to people and their families lives when someone has lyme disease. I would like to send these to you. If I could get an e-mail I would go to the library and have someone help me, being that I'm not too computer savy. The population that these documents represent is 13,135,521. Thank you, Linda Hiatt
- July 30, 2009 at 12:42 pm
Is this hearing being recorded? Will the broadcast will be available for downloading, on YouTube, etc.? It must be seen by as many people as possible.
- July 30, 2009 at 5:31 pm
I viewed the ILADS web broadcast. I am newly diagnosed "Lymie", but have suffered the symptoms for over 45 years.
I pray that the ISDA panel will put protocol prejudice and personal agenda aside and give the doctors & patients the ability to determine what treatment protocol is appropriate for the INDIVIDUAL patient.
If treatment guidelines aren't changedt, I fear thousands more will suffer – many will die – without having the opportunity to "fight the good fight" against Lyme.
We invite you to comment on our Facebook page.
Visit LymeDisease.org Facebook Page