posted
The conference was great. Glad I went. Was limited to 200 people but I think there were quite a few no shows.
The audience had a very good showing from National Capital Lyme Group of course due to the Arlington, VA location of the conference. But many other states were present -- mostly support group leaders, but also a couple of physicians I knew and Dr Kilani from Clongen was in the audience as well.
Ben Beard from the CDC was not present due to the government funding mess -- I really wanted to speak to him.
Dr J gave a very interesting speech. Not related to treatment -- mostly his background and his view on the politics of lyme and tickborne diseases. He did mention that he had access to land and has future hopes of establishing a Lyme/Tickborne Disease Center of Excellence in the DC area. Not totally clear if that would be an actual patient hospital or just a more involved clinic.
Either Dr J or the ILADS president (forget which one) mentioned goal of offering certification of lyme physicians in the future. More involved than current ILADS training now available.
A very very interesting presentation on a new lyme test that I think shows great promise. Will post more details in a separate thread.
The rest of the conference included discussion of the new Virginia lyme notification bill and then lots of 5 minute presentations from 20 or so different state tickborne support groups. Then lots of brainstorming sessions.
At this point the PAL (Partners Against Lyme) organization is trying to decide how best to support existing support groups -- whether that be with fundraising, legislation issues or education such as PSA's (Public Service Announcements). I don't think they really have an agenda yet.
I did get the impression that PAL really wants to help everyone work together and prevent duplication of efforts.
I think that direct patient contact will still mostly be done at the individual state group level and that PAL will serve more in a leadership role.
There were 2 stenographers hired that will post a report of the conference on the PAL website. Also a video was made -- not sure if that will be on the website or offered for sale.
I have never been to a support group meeting as hubby was always too sick to travel -- the closest one was at least 1 1/2 hours away. I was very impressed with all the attendees. Lots of very passionate people and sharing of lots of different ideas.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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surprise
Frequent Contributor (1K+ posts)
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Thank you Bea.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Abxnomore
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X 2!
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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