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Re: ISD? [Re: Bourbon] #1264074
06/06/12 06:19 PM
06/06/12 06:19 PM
Joined: May 2007
Posts: 2,511
Texas
Jackie_Chans_Mom Offline
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Jackie_Chans_Mom  Offline
Glider Addict

Joined: May 2007
Posts: 2,511
Texas
Originally Posted By: Bourbon
I was told maybe I need to ask shorter more direct questions.. and it may take longer but maybe the answers will be there...


Val.. did you talk to suz about her gliders passing?
she ask you VERY SPECIFIC questions regarding the liver issues?
would you like to enlighten us about what her questions were and how you responded..
I would think after 4 years it would be very common knowledge that I will not speak about any specific cases the SUGAR group is involved in. Our confidentiality policy prohibits it. It reads very much like the HIPPA laws for people. So, no, I will not "enlighten you" as to the specific content of any conversations I have had with anyone where it pertains to a SUGAR Group study. I'm pretty sure that you knew that before you even asked.

Quote:
you have been answering as the sugar group.. I still am not quite sure how you responded to Suz yet.. as the sugar group or as Val.. so I guess that is where I am going to start?
I'm quite sure that I have spoken to her in both capacities over the last 4 years or so.

Quote:
also could you tell us the many different things that could be contributing issues/factors that would show up on a necropsy/histopath as "hepatitis/liver disease"
I'm pretty sure that I could not tell you all of the the different things that could possibly ever be contributing issues to liver disease. Even if I had known that this pop quiz was going to be given today, I still don't have the answer to this question. Hence the research.


Now that this is out of the way, I will say that I spoke with Suz this morning (as Val, BTW) because I still had no idea why you keep insisting that any of her understanding is MY fault or doing. She shared your FB conversation with me. When I read the one paragraph in which she mentioned my name, I read it as a description of some of the research SHE has done, which included contacting me. She did other research on her own. Her comparison of diets between countries was HER doing, not mine or that of the SUGAR Group (though I did share with her that they don't see the same issues that we see). Her conclusions were/are HERS, not mine. She tells you that she noticed a difference and that was one of the reasons that she switched diets. That was her choice to make and her conclusions to draw. They have nothing to do with me or the SUGAR Group. She got the same information anyone could have regarding numbers and such and used that in her continued research.

If I were guessing (and it IS just a guess, I did not ask her this morning), I would think that at least some of her research came from the Wombaroo company. I see where ISD was discussed in these threads:
http://thesweetspot.forumotion.net/t1809p15-the-wombaroo-high-protein-diet and http://www.glidercentral.net/ubbthreads/ubbthreads.php/topics/1239633/2) These are both threads that took on great life after SUZ'S presentation of the diet at the RRRoundup. So, I assume that some of her research into switching to this diet came from Wombaroo. Again, just my guess.


Like it or not Bourbon, I do not have any designs toward discrediting BML. I haven't convinced anyone that it is a bad diet - haven't even tried. I still have it listed on TSS and still include it in my handbook as a choice for glider owners. I do this by choice, Bourbon. I don't have the issues with you that you have with me.

Last edited by Jackie_Chans_Mom; 06/06/12 06:21 PM.

~~ Val B ~~ 806-803-0318
Daily giving the abused, unloved, unwanted and neglected SOMETHING TO BELIEVE IN

PLEASE COMPLETE YOUR SUGAR GROUP SURVEYS!!!!!!!!!!!!
Re: ISD? [Re: nancy1202] #1264078
06/06/12 06:38 PM
06/06/12 06:38 PM
Joined: May 2007
Posts: 2,511
Texas
Jackie_Chans_Mom Offline
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Jackie_Chans_Mom  Offline
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Joined: May 2007
Posts: 2,511
Texas
Originally Posted By: nancy1202

Val, this discussion has brought up a few questions for me too, which I hope are OK to ask.
Your questions are more than welcome, Nancy.

Quote:

- What is the time period for the 19% of liver related deaths?
I hope that I am understanding your question. The 19% represents ALL of the data - so almost 4 years worth now. It is a cumulative number, and that is why it varies from the 2011 only number. We will, from now on, be giving both cumulative and yearly specific data.

Quote:

- What was the actual number of liver-related deaths represented by the 19%? (16% or 7 out of 43 studies for 2011)
I will have to look that up. I don't know off the top of my head.

Quote:
- Were any conclusions able to be drawn or commonalities found about the liver related deaths?
not yet. This number just alerts us that more research is needed. We start here and build. We are in the very infant stages of this type of research. It will be years before we are able to draw any conclusions. Well, maybe not years. But, we don't even try to find patterns or draw conclusions until we have 50 or more completed studies (where all paperwork is present) and I know that we don't have that many liver studies yet.


Quote:
- Were any conclusions able to be drawn about any ingredient(s) in the diets gliders were on at the time of death or at any time during their life for each diagnosis?

No. It is something that we keep in mind, but is not the focus of our study at this time. I know that everyone likes to focus on diet, but our pathologists feel that there might be a more likely issue to address, so that is where we are focused right now. We are not discounting a diet component, but it is not the thing we are working to rule out at this moment. Does that make sense?

I hope this doesn't cause you greater concern. We are keeping all of our slides/tissues/samples in storage for many years so that we can go back and look at something later if we want/need. We keep all surveys and documentation on file for even longer. So, we can continue to move forward in seeking answers and eliminating variables for a very, very long time with what we are collecting.

Quote:
- Did those necropsies or surveys reveal any kind of toxin the gliders might have been exposed to, ingested or in their environment?

Toxicology is a very different matter. We only receive toxicology when we specifically ask for it. Again, this is something that can be done later as well. Once tissues are fixed, they are able to be studied for... well, forever. The only thing that we test for in our lab is aflatoxin, and only then if they see evidence of it.

Quote:

I very much appreciate work done by SUGAR or any organization to help us learn. There is a huge, overwhelming pool of data out there, which can teach us so much more than just looking at individual cases.

And we very much appreciate people like you who do all you can to participate and add to the data base. Personally, it means more to me than I can express with words.


~~ Val B ~~ 806-803-0318
Daily giving the abused, unloved, unwanted and neglected SOMETHING TO BELIEVE IN

PLEASE COMPLETE YOUR SUGAR GROUP SURVEYS!!!!!!!!!!!!
Re: ISD? [Re: Jackie_Chans_Mom] #1264236
06/07/12 09:35 AM
06/07/12 09:35 AM
Joined: May 2008
Posts: 2,532
Kentucky
nancy1202 Offline
Glider Addict
nancy1202  Offline
Glider Addict

Joined: May 2008
Posts: 2,532
Kentucky
Val, thank you so much for the detailed responses! Yes, you understood the question about the time period of almost 4 years of data for the 19% of liver-related deaths. As far as the actual number, no need to look it up ... it must be more than the 7 from 2011 and less than 50 needed to start finding patterns.

Yes, many of us do focus on the diet component. That is something that we each have control over, and we try to make the best choices we can. Not all of us have the education or training to analyze the ingredients and have to trust that the diet we choose is working, or at least doing no harm. I feed BML and have talked to Bourbon about this. I am in no way speaking for her (she does a pretty good job of doing that herself!), but it appears that she just wants to be informed about any issues with her diet. If the iron in the baby food, for example, is doing harm, then yes that is something she should be, and probably is, investigating.


~Nancy~
http://www.derbycitygliders.com

:grey: Jackson/Izzie, Lukas/Leilah, Mizuki/Elektra, Oliver/Ava, Ramon/Paloma, Charming/Snow
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