posted
Good news for people who would like to attend the upcoming ILADS Lyme disease conference, but cannot. The first day of presentations will be streamed live over the internet (for free!)
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
WOAH NELLY!!!!
No one likes good stuff for free more than I do.. but has anyone actually thought this through?
Or has ILADS decided to just stand up to the world and show the world their nuts?
Is it just me or does anyone else see problems with this?
We are not allowed to mention doctors names here... fight to keep our docs under wraps... have to use initials to protect them ... go to the ends of the earth fighting for them and supporting them and funding their defense ...
And we have been busting our humps for years doing so ... and drowning in their pain along with them the whole time ...
And now they are going to just spill the beans about their diagnosis and treatment protocols in front of the whole world?
Isn't that a teensy weensy bit dangerous in an IDSA/insurance dominated world?
Especially since there are problems with having no current ILADS guidelines to back up anything they are doing past the standard 3 weeks doxy protocol?
If I were going to moon the world, stick out my tongue at every one .... or wave the red flag in front of the bull's face...
This is one of those times I would REALLY want an up-to-date set of friendly Lyme Guidelines in my back pocket.
And the fact the IDSA Guidelines state NO to a whole bunch of meds, protocols, etc that they now want to blab to everyone ..
Well, is that NOT a problem any more?
???
For example.. this talk...
"This session will discuss a variety of treatment options including rotation of antibiotics, including IM, IV, PO with names and side effects, medication for symptom relief when antibiotics do not work."
If ILADS wants to give away something free to make us happy... I would MUCH rather have a bowl of ice cream than have them do something like this.
Ice cream would make me happy ... but fighting another battle with the Medical Board won't ... spending all of my days and nights struggling to help them won't .... and having to find another doc to help all the patients who are stuck without someone to take care of them won't.
posted
ILADS members are revising their guidelines. They understand the need to get it done soon. However, this is not as easy as it would appear. There are many pages involved and many decisions to be made on specific issues and topics. It must be done carefully, and much thought and discussion are involved. They cannot just re-submit their previous guidelines, because they want to review it and update information as needed.
Posts: 18 | From Kansas | Registered: Jun 2005
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posted
Tincup, I think there are two different issues here:
1) It's still not appropriate for patients to be detailing specifics about their treatment by specific docs on a public forum...that could possibly lead to some sort of profiling by insurance companies or other parties.
2) BUT, at the same time, the ILADS docs and organization is upfront about who they are and what their positions are. They are a highly professional international organization, and seem to be a growing one, as is evidenced by how the annual conference has blossomed--three full days of scientific presentations this year.
There are so many questions and so much about the science and treatment of TBDs to be shared and ILADS is on the forefront...not hiding from the IDSA.
It seems to me that streaming is a great way to present the information widely to those unable to attend...a great idea! The more interested parties that want to listen and learn, the better.
That's my take on it.
Posts: 688 | From Florida | Registered: Aug 2001
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posted
Pray . Pray it goes well for us.
Posts: 211 | From In my house | Registered: May 2007
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Thank you so much for finding out about the live stream (I didn't notice it on the ILADS website). I switched my days at work so I can be home to watch. If I'm seeing correctly, it looks like all of the days will be streamed.
Thanks again! Be well.
Posts: 2238 | From East Coast | Registered: Jul 2010
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
TC....when I first read what you said here, I felt a sense of panic that perhaps we were going to blow it.
As I watch this streaming video, it is apparent that we are only seeing a selected portion of what will be going on at this conference.
With what I've seen so far, I only WISH that the other side would be watching even parts of this. Constantly the "other side" is saying we have no research, ILADS this and that but it is never good, but in a nutshell, they think there is no research done.
I think this would come off as showing that there IS research going on and they are coming off extremely professional. I don't believe they are giving up any secrets or something that could burn us later....atleast not up until the half way point.
Hopefully if you are watching and will feel better about what we are able to view. Let us know.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I thought I sent the following yesterday, but it didn't show up.
First, ILADS can't control which doctors get harassed for treating us thoroughly and compassionately. So we have to do what we can to protect our doctors here where what we say about them can be gathered as evidence of some nefarious sort.
ILADS has had conferences for at least 3 or 4 years, so they can't be seen as spilling the beans just now.
Go to their site www.ILADS.org and you aill see that dvd's are available for all of them, including 2010.
I love it that they are very assertive and professional and transparent about what they are doing and writing and presenting. They have some very talented and dedicated and brilliant people who are doing all they can for us.
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