Blog: Lyme Policy Wonk, published by the California Lyme Disease Association, Inc. Written by: Lorraine Johnson, JD, MBA and Executive Director of the California Lyme Disease Association
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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 (Lorraine Johnson,JD). 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)
Wow. Is this what we will be able to view via internet?
Posted by Melanie Reber (Member # 3707) on :
From what I understand , yes. It will be live via webcast.
Posted by seekhelp (Member # 15067) on :
When, I surely want to watch this!! Please let me know.
Posted by Melanie Reber (Member # 3707) on :
It says July 30th above, so I am assuming that will be the date. I have no idea what the time will be. Hopefully as this draws closer, more info will become available.
Posted by nomoremuscles (Member # 9560) on :
So I guess being thrown off the panel due to conflict of interest (and other malfeasance) does not preclude one from presenting.
Damn, Wormface gets to close.
I can't wait to see Shapiro, assuming we can watch, as he should be a scream. I don't anticipate one bit of truth will pass from his lips.
Posted by Nakita (Member # 18645) on :
This sounds like it's very good news.
Something I found disturbing was the spokesman for the American Lyme Disease Foundation. The site says "Of eight websites with "Lyme" in the domain name, only the American Lyme Disease Foundation provides accurate information."
Their site has foolishness on it. I could only read a little bit before it disgusted me. It is strange that a site supposedly to help people with Lyme Disease is actually hurting them with misinformation.
Posted by Melanie Reber (Member # 3707) on :
Yes, the ALDF has been a thorn in the side of accurate information for years now... such a shame.
For kicks and grins, check out the names listed under their 'board of directors' and 'scientific advisers'.
Wow! What a line up!
Posted by Pinelady (Member # 18524) on :
After seeing UOS I don't think some of these guys
deserve a place on any board or place of patient
responsibility in any way, shape, or form. I
personally would be ashamed to be associated with
the likes of those who are supposed to be medically
intellectually endowed.
Posted by merrygirl (Member # 12041) on :
Allie you rock!!! Go get 'em girl.
hugs, melissa
Posted by ping (Member # 6974) on :
18. Gary Wormser (physician-scientist)
Notice how The Worm is going to get the last word on this presentation line up.... Guess Worm, Bum Steere & Spliced-Gene were found to be honest, hard-working, non-conflict of interest participants... And The Band Plays On.
ping "We are more than containers for Lyme"
Posted by Melanie Reber (Member # 3707) on :
Oops, I just noticed that this had already been posted in activism. So sorry jblral... I don't get over to that section much recently.
Actually, I am interested to see how Wormser & Co. react or address the mounds of information that have been presented, in defense of correcting the IDSA guidelines.
What will they say, what WILL they say?
Posted by seekhelp (Member # 15067) on :
They will say it's not good science.
Posted by Tracy9 (Member # 7521) on :
I'm kind of glad they are speaking. After watching them in Under Our Skin, they look like complete arses.
Let's see how knowledgeable they look compared to the great lineup we have.
The ILADS presentation is about six inches thick and IT ROCKS. The IDSA guys just don't have any science behind them; what do they have, one study? We have TONS of science and studies!!!
If you go to www.ilads.com you can see a powerpoint presentation Dr. Steven Phillips made in the past, which is a work of art (though confusing to read.) He actually pulls out studies where the same IDSA guys contradict themselves; admitting in years past to Chronic Lyme and the need for long term treatment.
That is just the beginning; we have a great team and a GREAT presentation on our side!!!
There is hope!!!
Posted by Tracy9 (Member # 7521) on :
OOPS, sorry, that was www.ilads.org, and here is Steven Phillips past research:
Who are they presenting to? The new panel? Is the panel legit?
Posted by lou (Member # 81) on :
No, the panel is mostly IDSA clones. Not legit in other words. But since IDSA CHOSE the panel, this is not surprising. There is nothing crummy or low and sneaking that they won't do.
Posted by Tracy9 (Member # 7521) on :
Is there anything in print that describes how the panels chose the speakers? What criteria they used to select them?
Posted by JRWagner (Member # 3229) on :
up
Posted by Geneal (Member # 10375) on :
One would hope that since this will be a "live" broadcasting,
The weight of the backlash of potential viewers,
May actually help our cause.
I will remain hopeful.
Praying also for at least a better outcome for the guidelines.
Hugs,
Geneal
Posted by Tracy9 (Member # 7521) on :
Didn't help with Dr. Jones case, and that was broadcasted. The room was also packed with spectators supporting him.
Posted by Geneal (Member # 10375) on :
I know, I know.
I try really hard to always look at the glass half full.
Not half empty. Love ya' Tracy!
Hugs,
Geneal
Posted by Melanie Reber (Member # 3707) on :
I really love your attitude Miss G. Thank you.
Posted by Tracy9 (Member # 7521) on :
Same here, Geneal...it seems to always get me in trouble though! But your attitude is priceless!
Posted by Snailhead (Member # 18091) on :
I know Dr. Jones got the shaft, but since then the public has had more of an eye on the issue, with UOS and Cure Unknown. And, of course, great forums! Hoping and praying for the help we all need.
Posted by seekhelp (Member # 15067) on :
Someone should stand up and publicly ask Wormser and Shapiro if they are willing to take one for the team to prove their theory. Get purposely infected with Bb AND let it take it's course for 6 months to 1 yr. Then, treat with 21 days of oral Doxy at 200 mg to cure it and sign a waiver never to take Abx again. Offer $25k each to do this as a 'double-blind' study.
Posted by bettyg (Member # 6147) on :
yes, geneal, is a TRUE JEM ... polished to perfection with a heart full of gold.
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