WPI Q&A Session on Facebook - 7 October 2011

[Firestormm]

I couldn't see that anyone had posted this before - but do remove or merge if there is an existing thread.

Some of the answers (?) that I picked up on last night from the Facebook discussion. Seemed to leave more questions to be honest (and I think that was the feeling among many posting to be fair) but there we go:

https://www.facebook.com/pages/Whitt...179671?sk=wall

The order and numbering are my own and not as posted by Annette/WPI by the way

1. 'regarding current research projects that Dr. J was working on: WPI research projects are continuing as planned.'
3. 'regarding the Lipkin study: We're currently in discussions with Dr. Lipkin and our team of researchers to determine the best way to move forward.'
5. 'WPI is committed to completing all sequencing projects. This information is vital to our moving forward.'
7. the Vivint funds are still going to their intended purpose, which is to support the research and clinical program at the institute.
9. 'Regarding XMRV testing at VIP Dx. All tests offered by VIP Dx laboratory are clinically validated. If you have further questions about the tests please send your questions to info@VIPdx'
11. 'There are many questions regarding WPI's research involving patients from the UK. UK patients are a part of WPI's ongoing research program. We remain strongly committed to world wide research on behalf of all patients who suffer from ME and similarly presenting illnesses.'
13. 'We have offered Judy access to any necessary materials she needs to answer the concerns of the journal Science. WPI is not in possession of Judy's notebooks.'
15. 'Many house bound patients from the UK have asked about being included in WPI's research. While we would like to include all patients who desire to be in this study, our current study is at capacity. We're sorry if Judy offered to include you in studies which are already full. However, we'll make announcements on the WPI website when new studies are open for enrolment.'
17. 'The circumstances regarding the cell lines that were sent to Dr. Lombardi have been misrepresented by Judy. These cell lines were ordered for Dr. Lombardi's research and had nothing to do with the institutes's RO1 [NIH Research Grant].'
19. 'Many of you have questions regarding the blood working group. The purpose of this phase of the BWG study was to determine if current assays could reproducibly detect XMRV/MLV in blood samples.
    "They concluded that these results indicate that current assays do not reproducibly detect XMRV/MLV in blood samples and that blood donor screening is not warranted."
    It is important to note that the results reported in the blood working were not based on the testing methods that are used in the clinical laboratory.'
21. 'As part of the institute's research review process we will be following up on these types of concerns. Those of you with individual questions should write a letter to WPI for further follow up. If you are a UK patient who has already been formally enrolled in a WPI study but your sample has not yet been collected, we will get in touch with you.
    WPI address is:
    Whittemore Peterson Institute
    1664 N Virginia St., MS0552
    University of Nevada, Reno
    Reno, NV 89557
    Please email info@wpinstitute.org your personal information and in the subject line please post UK Study . I'm sorry to hear you are so sick.'
23. 'Although human gamma retroviral studies have presented many complicated challenges, we feel it is important to continue this line of research for now. Studies such as these involving pathogens, are part of a much more comprehensive research program at the institute. WPI scientists are continuing studies surrounding inflammation, immune dysfunction and other future biomarkers of disease. '
25. 'Each person at the Center for Translational Medicine is given an individualized treatment plan. As far as I know there is no magic bullet or one answer that fits all. I do feel that it is uplifting and thus very appropriate to share the stories about successful patient outcomes while also protecting a patients right to their privacy.
    Published patient case studies can be a valuable way to provide appropriate information to the public.
    It is our greatest hope that all patients can one day be provided with effective treatments. Discovering those answers are at the very core of WPI's reason for being.'

I think that was most of them. I kinda got a bit bored/tired wading through it all last night

 

[Wonko]

"10.'Many of you have questions regarding the blood working group. The purpose of this phase of the BWG study was to determine if current assays could reproducibly detect XMRV/MLV in blood samples.
"They concluded that these results indicate that current assays do not reproducibly detect XMRV/MLV in blood samples and that blood donor screening is not warranted."
It is important to note that the results reported in the blood working were not based on the testing methods that are used in the clinical laboratory.'"

Unless I'm wrong, which is a definate posibility ATM, that woudl strongly suggest the WPI dint use it's own testing methods during the BWG?

Another point (not directly related), I'm sure I've seem something, somewehere, which said that the BWG was collecting and storing blood teh same way as is routinely done for blood donation testing, for 2 reasons, the first being that if it couldnt be detected then it was likely that the blood supply was safe (as existign methods were destroyign it), and teh second being that to do otherwise could result in existign stocks and screening methods having to be abandoned or something. So they test using the existing collection and storage methods first.

Or amybe I've got it wrong?

 

[Firestormm]

I did notice a couple of people asking what your bolded sentence meant Wonko. Which laboratory? WPI or VIPdx. Would seem to me very strange if they didn't use the best possible methods they had available to try and find 'XMRV'. Obviously they didn't but what this actually means I don't know. All questions about testing and validity were being referred to VIPdx.

Don't know nothing about the storing methods either I am afraid Wonko. I do know (from reading the WPI FB page) that statements are being prepared by them in response to all of this - so maybe you will have some answers? Also there is that webinair thing for the BWG where they might reveal more and you can register and post a question:

https://www1.gotomeeting.com/register/606452768

 

[Enid]

Glad to see research on HGRV's continues.

 

[Jenny]

If you are a UK patient who has already been formally enrolled in a WPI study but your sample has not yet been collected, we will get in touch with you.

Thanks Fire. I won't be holding my breath though.

Jenny

 

[Andrew]

Firestormm, thanks for putting that list together.

 

[Firestormm]

That's alright. I see others have done the same and posted it as a summary. Don't think I missed anything anyway. Seems Vincent Lombardi is now temporarily heading up the WPI lab btw.

 

[Andrew]

Seems Vincent Lombardi is now temporarily heading up the WPI lab btw.

That should certainly help continuity.

 

[alex3619]

Hi, my understanding of the BWG study is that it was looking at fast tests. You only have several days to test for blood pathogens before donated blood has to be released for use. There is limited time. Culturing is very time consuming and the blood would have to be destroyed and not used for transfusion long before the testing was done. There is also an issue with mass screening - only certain techniques are suitable. So other techiques will be ignored for this purpose. I am not sure what this means for the WPI testing, I have not looked into this recently.

Bye
Alex

 

[Sam Carter]

Hi, my understanding of the BWG study is that it was looking at fast tests. You only have several days to test for blood pathogens before donated blood has to be released for use. There is limited time. Culturing is very time consuming and the blood would have to be destroyed and not used for transfusion long before the testing was done. There is also an issue with mass screening - only certain techniques are suitable. So other techiques will be ignored for this purpose. I am not sure what this means for the WPI testing, I have not looked into this recently.

Bye
Alex

Hi Alex,

From my reading of the BWG study the viral culture assays performed by Ruscetti (Western blot) and Hewlett (Real-Time PCR) took 19 and 21 days, respectively.