Joe
Posts: 249 | From Northern NJ | Registered: Jul 2005
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bettyg
Unregistered
posted
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.
Everything mentioned in your post,whether written by Mac McDonald, or P.J. Langhoff,is a valid concern.
The "archive" of the hearing will probably require registration,and a software download also...
You would think, at least, if the archive is made available on an "independent" site, that one could watch on an hour-by-hour basis. This would enable them to just get to the testimony that interests them.
I haven't seen anything yet on whether written transcripts will be available at some future point?
I think maybe I will e-mail Mr.Blumenthal's office, although I really believe no one will be there to review e-mails on a summertime weekend.
Hope it's not too late to implement-it sounds like a real good idea.....
Joe
Posts: 249 | From Northern NJ | Registered: Jul 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Some Lyme Groups are also showing the entire hearings live all day in public places; such as church halls, VFW halls, etc.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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That's good to know. I think I'll wait until I can view it on a "neutral" site,or just follow the "play-by-play" on CALDA's blog.
As it is, I'm not all that sure that the "Society" is going to have much new to say. It will probably be a rehash of what they've been spewing all along.
I'm primarily interested in what the Dr.'s and researchers have to present. (I mean the real Dr.'s and researchers)
Joe
Posts: 249 | From Northern NJ | Registered: Jul 2005
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Doesnt' your security that you install on your personal computer protect against just this kind of thing? I mean why am I paying for security protection?
Also, I think the IDSA has already made their decisions. This is just all for show.
I hope I'm wrong though!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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In theory,yes. As long as you get regular updates,and do system scans when required by your anti-virus software. Many are automatic,and stay constantly current.
I picked up a virus by going to a site on "Bing", Microsoft's new search engine. A lot of times, even if you're going to a government site (which you should be able to trust),you'll get a message saying the site's certificate has not been updated in "x" number of weeks.
The question is then, do you want to accept it anyway,and proceed? (It looks legit-is it?)
At that point it pretty much becomes a matter of "You pays your money,and you takes your chances"
Maybe something will occur between now and the 30th that will enable live viewing for those that are "concerned".
Joe
Posts: 249 | From Northern NJ | Registered: Jul 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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.
I second that motion....And that's all the "Parliamentary" procedure, and "Robert's Rules of Order" that anyone's going to get out of me at this point.
I just have one question:
Can we all take our gloves off now?
Joe
Posts: 249 | From Northern NJ | Registered: Jul 2005
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The IDSA has futzed up a number of opportunities in the past..With their ill-conceived media and PR announcements after any headline with "Lyme" in it ....Has anyone else ever seen any major announcements regarding any diseases other than Lyme with them?
Is it too much to ask, that with the AG's pressure,the media spotlight,and all of our eyes on them, that they'll actually get it right this time?
posted
copying joe's 1st post here and breaking it up for other severe neuros like me to read also ...
Lyme Patients Watching IDSA Meeting with Optimism & Caution
July 30th meeting to revisit IDSA Lyme guidelines.
Greenwich, CT (PRWEB) July 24, 2009 --
On July 30, 2009, the Infectious Diseases Society of America (IDSA) Lyme Disease Review Panel will hear testimony in a daylong hearing in Washington, D.C.
Patients, researchers and physicians from both sides of this heatedly debated topic will present testimony at the hearing, which is required under an antitrust settlement between the IDSA and the Connecticut Attorney General.
The Attorney General's investigation revealed the 2006 panel members had widespread commercial conflicts of interests and had excluded peer reviewed scientific evidence supporting chronic Lyme disease.
The new panel is charged with evaluating the scientific basis of the guidelines, which deny patients access to antibiotic therapy--the only treatment option available for chronic Lyme disease.
The IDSA guidelines are relied upon by health insurers to deny medical reimbursements and form the basis for unprofessional conduct actions, which place physicians, who continue to treat chronic Lyme disease, at risk of losing their license.
The testimony will be aired live over the internet and archived for one year on www.idsociety.org, the IDSA website.
Further details will be available a week before the hearing.
Lyme patients and advocates from around the country will be watching with optimism and caution as this important and powerful medical association reconsiders its controversial guidelines and the consequences for people and families with Lyme disease.
"These guidelines are so restrictive they effectively deny chronic Lyme disease patients access to the only medical treatment available to treat their illness and restore health.
Guidelines need to place the interests of patients over the profit motivations of commercial interests in vaccines, Lyme test kits and insurers, which were widespread on the 2006 panel.
Even this process, with IDSA selected panel members and presenters, is not impartial.
Still, we hope the new panel will seize this opportunity to set things right by patients and alleviate the needless suffering these guidelines cause." commented Attorney Lorraine Johnson, Executive Director of the California Lyme Disease Association and one of the presenters.
"What we need is the establishment of a broader set of guidelines that reflect the latest science rather than guidelines that ignore an entire line of scientific reasoning, and we need guidelines that offer options for both diagnosis and treatment," adds Pat Smith, President of the national Lyme Disease Association,
"since the current guidelines deny patients access to antibiotics, which is currently the only treatment option that can restore patients back to functional lives."
Lyme disease is a complicated illness. Diagnostic testing may fail to identify up to 50% of patients with Lyme disease which means that the ability to clinically diagnose patients is essential.
In addition, many patients remain ill after standard treatment, suffering a disability equivalent to that of congestive heart failure.
According to a recent survey by CALDA, many are unable to work or go to school. Physicians need guidelines that provide treatment options and permit them to use their clinical judgment to restore health to these patients.
The IDSA protocols require positive lab testing for a diagnosis, restrict the exercise of clinical judgment of physicians and deny patients treatment options.
There is growing opposition to the IDSA guidelines. A number of researchers, physicians and medical societies, including the American Association of Physicians and Surgeons, have opposed the IDSA restrictive treatment guidelines.
The Connecticut State Medical Society supported legislation which unanimously passed the Connecticut General Assembly and was signed into law, protecting physicians from medical censure based on IDSA guidelines.
California and Rhode Island have similar laws.
This is reminiscent of the legislative effort for AIDS and breast cancer that patients pursued to obtain access to health care.
Although the CDC reported over 27,000 cases of Lyme disease in 2007, it admits reported numbers are probably 10 times higher, meaning 270,000 new cases of Lyme disease in 2007 alone.
That figure does not even count cases diagnosed clinically by doctors (without a rash or positive test).
"Policymakers have created diagnostic and treatment guidelines that box physicians into an unworkable paradigm. This is a complex illness, with poor diagnostic tests.
The current guidelines have unacceptably high failure rates for all stages of the disease and leave many patients suffering with no treatment options.
Physicians need guidelines that give them the flexibility to treat these patients and restore them to health." adds Harriet Kotsoris, MD, Time for Lyme Medical Advisor.
What is needed to combat Lyme disease?
Facts, rather than polemics. Research for better diagnostic tests and treatments. Clinical judgment for Doctors. Treatment options for patients. Education for the public.
President Obama told the AMA "You entered this profession to be healers - and that's what our health care system should let you be."
National and grass roots organizations, such as Time for Lyme, the national Lyme Disease Association and The California Lyme Disease Association are raising awareness, scrambling for much-needed research dollars to get definitive answers, and supporting legislation to allow clinicians greater treatment flexibility.
We welcome a spirited and fair debate: a debate which acknowledges the existing inconvenient truths and the thousands who suffer from this latest mystery disease.
Time for Lyme, www.timeforlyme.org, the national Lyme Disease Association www.LymeDiseaseAssocation.org, and California Lyme Disease Association (www.lymedisease.org) are non-profit organizations that were founded by individuals who had personal experience with Lyme disease, in order to address the lack of research, education and support services available for this newly emerging infection.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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