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Lyme Institute of Medicine meeting summary

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Posted 10/13/2010 3:41 AM (GMT 0)
I attended the meeting on both Monday and Tuesday.  

General thoughts:  

-The attendance was relatively low (approximately 120 people on Monday and 90 on Tuesday).  

- However, I felt that a vast majority in attendance were 'pro-Lyme' (including the scientist and MDs).  

-Lyme suffers and advocates did a VERY nice job describing their illness(es) and asked good (logical and educated) questions to panel members.  

-Overall, I though the meeting was productive and informative. 

I got a very positive vibe from those attending. 

The highlight of the meeting (in my opinion) was the talk (and follow-up discussion) given by Pam Weintraub.  It was nothing short of brilliant.   She was given a standing ovation by the audience!!

I'm a pessimist by nature, so I doubt much will come from the meeting (in terms of policy or funding changes).  However, if we continue to voice our concerns,  draw attention to our disease, and educate the community I have to think that eventually someone will listen.  I hope. 

I'd love to hear other people's impression of the meeting (those that attended or watched online).   

Posted 10/13/2010 3:52 AM (GMT 0)
Thank you for sharing this - it's nice to hear something positive!
Posted 10/13/2010 4:44 AM (GMT 0)
Forgive me for asking this, but can I still watch on line? I forgot all about it, I am having troubles concentrating this week. I am waiting for the conference on Friday and I HOPE I won't forget. It is so bad that I write things down and I have no recollection of doing this... Nor do I remember to look them up when I need them.

Thanks for posting this and thanks for going, I am sure I am not the only one that is greateful to you for being there for all of us.
Posted 10/13/2010 6:11 AM (GMT 0)
Needshelp, Thanks so much for sharing. I watched Pam via webcast and thought she was absolutely fantastic! I also thought most of it was positive and productive and can't imagine how the panel could ignore all that was said and proof subitted. Then again, I ususally tend to hope for the best and am often disappointed...ugh!! All we can do is hope for the best at this point.


Simela, I have the same problem and don't have an infant and bunch of little kids to care of. I'm sure they are so cute....such little angels who manage to wreak complete havoc at times....lol! You could probably write a book or journal of things they do. To be honest, I can't imagine at this point what you're going through but you're strong and seem to be doing fine. You're surrounded by lots of innocent, pure love for you...try to concentrate on these moments as much as possible.

Anyway, thank goodness we can usually count on others who are not as bad with memory to remind us. I'll try my best to remember and post if no one else does.

I'm pretty sure the webcast of the IOM conference that took place on Monday and Tuesday can be viewed here:
http://www.tvworldwide.com/events/iom/101011/default.cfm?id=12856&type=flv&test=0&live=0


I also believe the ILADS Conference which begins Friday morning at 8:30 EST can be viewed via webcast at:
http://www.ilads.org/lyme_programs/lyme_events_video.html#page=page-1


Jesse Ventura's show about the conspiracy on Plum Island is on Friday night at 10:00 EST on the Trutv channel.

I wished we all lived closer so we could watch Jesse Ventura together...LOL! I also wish we could drink chocolate martinis while watching but realize that this is a big NO NO and probably will be forever...ugh!
Posted 10/13/2010 10:12 PM (GMT 0)
That would be great, to watch it together. We'd have to have chocolate milk, instead of chocolate martinis. I must say I missed my chance on chocolate martinis, I never had one and now I'll probably never could! I ate enough chocolate, though LOL

Thanks so much for the links, they came just in time, I took a break from reading for a few days to get the house clean for fall, in case I collapse, before my IV is put in. I am rather progressing quite slowly, baby is not cooperating, but she did help me clean a door today. I gave her a clean rag and she we were cleaning windows together LOL She got bored before I finished, though--I guess she didn't find it interesting enough! I'll watch the webcast tonight, after I put the kids to bed.

Yes, kids are funny, my son believed for years that the ATM machine is daddy's boss because it gave us money. Also, every time he wanted something, he could not understand that our finances are limitted, he wanted us to go to the bank and get money to get him new toys every day!
Posted 10/14/2010 12:47 AM (GMT 0)
LOL! I would love to see pics of your little ones...too bad you can't post them here.
Posted 10/14/2010 4:12 AM (GMT 0)
http://www.tvworldwide.com/events/iom/101011/default.cfm?id=12856&type=flv&test=0&live=0
Posted 10/14/2010 3:42 PM (GMT 0)
Darn Simela!!
When I saw that link I thought OOOHHHH!! I get to see Simela's beautiful kids!!!! I was sooo excited!!! ....imagine my disappointment when the conference showed up instead!!! LOL!!!

I watched pieces & parts of the IOM conference, & was able to catch the last part of Pamela W's presentation.

Thank you so much Needshelp for your attendance & posting your thoughts on it!!! I am like you a pessimist and believe as you stated - if we make enough noise, someday 'they' will recognize us!! You know, the whole squeaky wheel thing goin' on!!!

Simela,
I am so sorry to hear of these troubles!!! Although I do know what you mean all too well - only my kids were both in their teens when I hit that stage making it a little easeier to get through.
And chocolate martinis???? Eww!! I LOVE my chocolate - even though I have been able to keep myself from having much anymore - but that sounds about as bad as chocolate gravy!!
Posted 10/14/2010 5:01 PM (GMT 0)
LOL

Well, I will try to send you pics to your email Trav. Scorpio is hiding her email from me (LOL) so I can't send pics to her. Maybe you will send me your email, and I will send pics to you too, scorpio! Just let me know here you sent it, I am not checking my email that is posted on this side very often, I only use it for this. But I have a lot to sort out until I get an appointment for the Picc line, a lot of phone calls to make, still not clear where I have to go bec my llmd does not take my insurance and my PCP says she can't make the appointment for me, bec she is not ordering this. So, now the LLMD's office told me to call on Monday bec he is out for the conference until Monday. I'll have to wait until then and hopefully it will be all sorted out. He made an appt with his hospital, but I was told by my ins that I will get stuck with a rather large bill, if I go there.... Head is still spinning around fr all this!

Thanks to all of you for the links, I watched part one last night, I will watch the rest in the next few days.

Trav: My kids would be delighted to have some chocolate gravy!
Posted 10/14/2010 7:35 PM (GMT 0)
Hey Simela, I also got excited when I saw you posted a site...hahaha! My e-mail is [email protected]
Posted 10/14/2010 10:41 PM (GMT 0)
LOL

Well, I have troubles with yahoo right now, but I will try to send you pics tonight, while I watch/listen to the webcast. I can't keep you so excited for too long, or you may get anxious, and anxiety is not good for Lyme LOL
Posted 10/14/2010 10:46 PM (GMT 0)
Thanks for taking that into consideration....hahahaha! I look forward to seeing the pics.
Posted 10/15/2010 3:19 AM (GMT 0)
Scorpio and Trav:
I send you some pics. Let me know if you got them. I am going to watch the second part of the webcast--I think it will be more interesting than the first, since they did the introduction with the stuff that we all know about.
Posted 10/15/2010 3:25 AM (GMT 0)
BTW, I did not intend to post that link above, I actually wanted to copy it and paste it in my browser to watch it. It looks like I posted it here instead, without realizing. But I am glad that I got you LOL
Posted 10/15/2010 3:51 AM (GMT 0)
lol....I received the pics and think your children are absolutely adorable. Enjoy the webcast but try to save some energy for tomorrow's ILADS conference. Thanks for sending the pics and have a good night!
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