TBD WG Final Draft- July 2018
Comments After Reviewing Draft
(under construction)
(Final Draft is attached below)
The draft was sent to interested parties for review at 9 PM on July 23, 2018. The meeting started at 10 AM on July 24, 2018. The time to review the 106 page document was less than 14 hours before the meeting, IF someone took time overnight to review it. I also heard members of the group mention this in the meeting, so it wasn't just the public that didn't have access to the report, it was the working group members too.
After the meeting's conclusion and a second quick look at the report, I see many points that have been under contention for years that we've succeeded to completely blow away or at least we've kicked really hard in the shin.
I was particularly impressed with Pat Smith's (President of the LDA) performance throughout the entire process. There wasn't one negative point she missed, tried to have changed and argued over for our sakes. She was ready at the drop of a hat to present the science required to support our views because she knows it all too well, inside and out. Not wanting to refer to a woman as a bull dog, I'll just say she did a fantastic job and we all should be very proud of her efforts.
On some points Pat Smith couldn't make the exact changes we'd hoped for, however, she was up against a pot full of wicked people who have more power to promote their personal agendas than anyone should have. But, she gave it her all, got many things accomplished and that's what we needed someone to do.
I also saw a lot of the LymeDisease.org influence and studies mentioned in the report. Without them we'd have surely lost on many points. I am glad Lorraine Johnson and Phyliss Mervine are on our side as they've been for decades. Excellent work!
Random Notes (will add more when I have time to more carefully comb through the report).
1) The report is more lengthy than need be. It is saying the same thing in many sections, too many to count. Redundant.
2.) The report is confusing when discussing tick borne diseases, infections or pathogens. How many are there?
Page 3- 18 TBD pathogens
Page 7- at least 20 known infections
Page 16- 13 TB illnesses
Page 38- "but not limited to"- 7 diseases & Lyme (total of 8) are listed
Page 48- “there are many” and “a range of infections and pathogens”
Page 51- "Uncommon but potentially important variant strains in humans”- lists 3
Page 91- Lists either 13 or 18 if you count individual strains (such as in Ehrlichiosis)
EDIT- This point (above) was brought up in the meeting by Pat Smith and the changes are going to be made.
3.) BARTONELLA IS NOT INCLUDED ON ANY LISTS OF TBD's.
There are many studies showing Bartonella has been detected in ticks and mention in the report that many TBD patients have Bartonella infections.
Example of some studies- https://sites.google.com/site/marylandlyme/tick-borne-diseases/bartonella/ticks-bartonella
4.) Some sections are already outdated. For example, the section on the National Guideline Clearing House. The situation changed. https://www.ecri.org/press/Pages/ECRI_Guideline_Website.aspx
5.) The word "despite" is a commonly used CDC/IDSA Lyme related word. You'll find it used 20 times in this report.
6.) Jill Auerbach, patient advocate, presented a good oral report early on in the meeting. I was impressed.
More later...
Tick Borne Disease Working Group Final Draft Attached Below...
