The IDSA has announced who will be allowed to present testimony to its newly configured Lyme review panel on July 30. Read more about it at the LYME POLICY WONK:
can't read continuous text so breaking it up so we can read it this is too important NOT to be able to read it..
The Infectious Diseases Society of America has selected presenters to speak before its Lyme disease guidelines review panel on July 30.
(This is part of the guidelines review process mandated by the IDSA's settlement with the Attorney General of Connecticut.)
The speakers representing patient advocates are Tina Garcia, of the Lyme Education and Awareness Program (LEAP) and me.
Three researchers that are not affiliated with either ILADS or IDSA will speak:
Drs. Brian Fallon from Columbia, Ben Luft from Stony Brook, and David Volkman, previously from the National Institute of Health (NIH).
The following members of ILADS will be presenting:
Drs. Daniel Cameron, Ken Liegner, Steven Phillips and Raphael Stricker.
In addition, Allison Delong, MS, of Brown University, and Dr. Donta, a member of IDSA, will present.
Those advocating for the IDSA guidelines include
Drs. Phillip Baker (President of the American Lyme Disease Foundation and previously with NIH),
Barbara Johnson (Centers for Disease Control), Eugene Shapiro, Sunil Sood, Allen Steere, Art Weinstein and Gary Wormser.
Below is the final order of presenters:
1. Tina Garcia (patient advocate ) 2. Lorraine Johnson (patient advocate) 3. Daniel Cameron (physician-scientist) 4. Phillip Baker (physician-scientist) 5. Ben Luft (physician-scientist) 6. Allison Delong (scientist) 7. Barbara Johnson (physician-scientist) 8. David Volkman (physician-scientist) 9. Sam Donta (physician-scientist) 10. Eugene Shapiro (physician-scientist) 11. Brian Fallon (physician-scientist) 12. Sunil Sood (physician-scientist) 13. Ken Liegner (physician-scientist) 14. Allen Steere (physician-scientist) 15. Steven Phillips (physician-scientist) 16. Art Weinstein (physician-scientist) 17. Raphael Stricker (physician-scientist) 18. Gary Wormser (physician-scientist)
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wow, i'm very impressed by the line-up of folks here! good job, and thanks for making us aware of this.
july 30, we'll be praying that day for all of you representing the chronic lyme/co-infection community ... Posted by bettyg (Member # 6147) on :
i just sent this wonderful news to those on my lyme list group!! thanks again for posting this great news when hopefully we can OVERTURN IDSA'S 06 LYME GUIDELINES !!!!
Posted by lou (Member # 81) on :
Not a very long list is it? And I am astonished at the choice of patient advocates. This looks very carefully chosen to me, as one is a person who is not affiliated with any of the groups that have been most active. In fact, she spends most of her time complaining about other activists and is very far out in the spectrum, does not represent a real group of any size.
If you are reading this Tina, a lot of weight of patient activism is riding on your testimony and if you screw this up, people are going to be hurt.
Lorraine can be counted on, for sure, but Tina? We will find out soon enough as it will be webcast and we will be able to judge for ourselves. Sorry to be negative, but she has often been negative in the past and booted off a number of lyme forums.
[ 06-07-2009, 10:32 AM: Message edited by: lou ]
Posted by Leelee (Member # 19112) on :
There are some very good speakers on the list! I hope those in our favor can be persuasive. Things are looking up, I think.
Posted by radfaraf (Member # 11909) on :
Glad to see my LLMD on there.
Posted by bettyg (Member # 6147) on :
lou, i was wondering about that too on HOW our 2 reps were chosen.
1 patient advocate i would have LOVED to have seen on this list is: *******************************************
PJ LANGHOFF, WISC. AUTHOR, of 5 lyme books with the last one THE BAKER'S DOZEN, FRINGE BENEFITS....
it's ALL ABOUT IDSA w/1000 links of refuted links of what they said/did and what they are saying now!!
she sent her book to ALL on the panel!! ----------------------------------------------------
so lou, i too personally was shocked at 1st choice!!
lou, i also agree with your additional statement to tina; i've heard on the call-in shows 1-2 times, and very disappointed when she was attacking the ilads pres.
lorraine will be wonderful; she knows it all and with her helping on dr. jones defense team for starting of 3rd year .... very appropriate!! Posted by lou (Member # 81) on :
Yes, I would sure like to know how many patient advocates applied but were refused. If the patient community had been able to pick its own reps by a vote, one of these people would not be on the list. Someone on the other side is paying very close attention to what goes on in the patient community, making notes. Could his initials be EM? That is the only explanation that makes any sense.
Posted by Leelee (Member # 19112) on :
I'm afraid I don't know who Tina Garcia and Lorraine Johnson are. Posted by ticked-offinNc (Member # 15420) on :
I wish we were on the panel, arent we thr real experts?Betty should be on that list
Posted by dmbfan (Member # 11948) on :
I'm annoyed at the order of speakers. that put paitent advocates first so their impact is lost by the end. And the last half seems to be loaded on the IDSA side. Seems a bit too convienet for me.....
Posted by bettyg (Member # 6147) on :
ticked off in nc..i could talk their socks off !! thanks for the high compliment my friend. this has been a week for making my head swell up.
i'm not a public speaker but have done so over the years after gaining strength myself; SELF-CONFIDENCE!
but there are MANY other qualified folks including our own LDA PRES. PAT SMITH AND CALIF. PHYLLIS MERVINE! they've been in this lyme war for years wrestling with all these want-to-bes!
thru CURE UNKNOWN i'm learning more who some of these fantastic LYME PIONEERS really area and what they have gone thru to get this far.
then there is our ice cream buddy, TINCUP, who's been at this 20-23 years!
so we have many qualified folks; i'm just disappointed since i NEVER saw anything asking WHO WANTED TO BE PATIENT ADVOCATES TO TALK TO THIS NEW PANEL!!
how did we overlook this ?? lyme fog days/nights where none of us caught this.
so lou, thanks for addressing what i was thinking. Posted by j_liz (Member # 20496) on :
Have you taken CALDA's survey for the IDSA review?
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this is too important NOT to be able to read it..![[group hug]](graemlins/grouphug.gif)
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