NIH XMRV Study Update.

[VillageLife]

Tweets from: @CII722
The Center for Infection & Immunity is dedicated to pathogen surveillance & grasping how gene-environment-timing interactions contribute to health & disease.
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@CII722: @DeBortgjemte @JAScarb @MEAssociation The XMRV study will NOT be published on June 30. Rumors associated with this release date are false.

@CII722: @DeBortgjemte @JAScarb @MEAssociation We have begun composing the manuscript/compiling the data. Follow @CII722 for updates. Cheers!

 

[VillageLife]

Just seen more tweets from @CII722

Question from: @MyalgicEncephal: Was the original data for publication of the NIH study the 30th June? Why has it been pushed back?
#mecfs #xmrv #MRV #virology #HHS


reply from: @CII722: June 30th was an estimated date. It was never definitive.

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Question from: @MyalgicEncephal: Was the original data for publication of the NIH study the 30th June? Why has it been pushed back?
#mecfs #xmrv #MRV #virology #HHS


Reply from: @CII722: Hopefully the publication, which will be released relatively soon, will answer ur questions. That's all we can say 4 now.

 

[August59]

End of August!!!

 

[Firestormm]

2013

 

[VillageLife]

Saw this on another forum from lipkin today. (hope they don't mind me posting)

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We will release our findings as soon as possible; however, the work is still in progress. Please note that irrespective of the outcome we have a long term commitment to you and others in the community.
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[barbc56]

Saw this on another forum from lipkin today. (hope they don't mind me posting)

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We will release our findings as soon as possible; however, the work is still in progress. Please note that irrespective of the outcome we have a long term commitment to you and others in the community.
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Thanks for the information VillageLife.

Barb C.:>)

 

[Firestormm]

Was reading this earlier this morrow from Jenny Spotila (Occupy CFS). Not sure I/you/anyone would agree with it (and not sure we'd want to critique her point of view here necessarily), but it seemed rather useful and linked to a previous post about Lipkin's Study penned last year which brought a lot of what's been said about this overdue study, together. It seemed there was quite a bit more revealed with regards to the preparation for the study than I remembered (and support expressed by e.g. Harvey Alter) at the NIH Conference (see link embedded in her post). Still, it remains inexplicably overdue. Perhaps it will be served up with a bow for in time for Xmas?

 

[Bob]

Was reading this earlier this morrow from Jenny Spotila ... Not sure I/you/anyone would agree with it (and not sure we'd want to critique her point of view here necessarily), but it seemed rather useful...

Interesting find, thanks Firestormm.

(Just for info, I don't think that 'Jennie Spotila' is 'CFS Patient Advocate'.)

 

[Firestormm]

Oh crap yeah sorry about that. Gods know why I added that!! Blimey. Thanks I've edited accordingly

I've related some of the above to you on your other thread about NGS specifically: http://forums.phoenixrising.me/index.php?posts/284462/

 

[barbc56]

Wow, Fire, you are burning brightly. This was very useful information. A long read as a paper would reference another paper which would take you to another paper, but cetainly worth it!!

Thanks again.

Barb C.:>)

ETA The following statement, IMHO, says it all.

Third, there are the retractions. This is the deal breaker for me. Both Lombardi and Lo have been completely retracted. In other words, that data is gone. Retraction is not like divorce, where the parties agree the marriage is over. Retraction is annulment, where the marriage is considered to have never happened at all. It’s like rewinding the clock to September 2009 before Lombardi was published. There is no published evidence linking XMRV or MLVs to CFS. None. The Lipkin study was designed to clear up the conflicting data between Lombardi and Lo on one side and everyone else on the other. But now, there is only one side. There are dozens of papers that show no association between XMRV and CFS. Three papers published in Science retested some Lombardi and/or Lo samples and found them negative. And the original papers are gone – whoosh – evaporated. There is no data to support the hypothesis. There is no conflict in the published data now. There is nothing to verify.

http://www.occupycfs.com/2012/07/31/nih-funding-and-the-xmrv-effect/

 

[Firestormm]

Lol. Yeah 'burning bright' that's me. Just took my morning meds for the second time not remembering I'd all ready taken them

 

[anciendaze]

Lol. Yeah 'burning bright' that's me. Just took my morning meds for the second time not remembering I'd all ready taken them

Firestorm, I strongly recommend you use a pill container which separates each day's dosage. I check mine a couple times every day because I can't remember whether or not I have already taken them. I also use my computer to check the date. There have been times when the pill box alone was not enough because I was mixed up about the date. I spend some minutes every morning on getting oriented in place and time.

 

[barbc56]

LOL, Firestone, I have done this so many times!!

To think before this DD, I rarely took an aspirin, would walk into a room and remember what I was suppose to do, knew right where my car keys were and absolutely never put my cell phone in the refrigerator!!

Good idea anciendaze, now only if I can remember to fill up the pillbox.

All kidding aside, anyone know a pill container that has a lid that is child proof? I get paranoid when my grandkids are around so just keep the pills in the child proof bottle and then... well you can guess. I I did find a pillbox that's childproof but it's only for one day which is not as convient as I would like.

Barb C.:>)

 

[Firestormm]

Firestorm, I strongly recommend you use a pill container which separates each day's dosage. I check mine a couple times every day because I can't remember whether or not I have already taken them. I also use my computer to check the date. There have been times when the pill box alone was not enough because I was mixed up about the date. I spend some minutes every morning on getting oriented in place and time.

Thanks Ancient. It's been recommended to me before and like other things I have been stupidly ashamed to get one. I will though. Normally I'll have the pills in my hand and then a memory will flare reminding me I've done this before. But sometimes not. Like you I have 'pill-time' (like happy-hour but not) set up as reminders on my MSOffice on the computer - just have to have the damn thing on lol

 

[August59]

Didn't they add testing of spinal fluid relatively late in the study process. If that's the case I can imagine trying to round up those samples could have been a little time consuming and therefore could cause a significant delay in this study.

I thought that they may have been able to get some samples from Natelson and his group or from Bariniuk. However, I do not think that was within the scope of the study and Natelson and Bariniuk are in the procees of doing their own studies on spinal fluid, so that wouldn't have worked anyway. Dr. Bariniuk's study should be close to being completed and hopefully will hear from it soon.

 

[Bob]

Didn't they add testing of spinal fluid relatively late in the study process. If that's the case I can imagine trying to round up those samples could have been a little time consuming and therefore could cause a significant delay in this study.

Lipkin's XMRV study only used blood. I think you might be thinking of Lipkin's CFI pathogen study, which Cort says might be including spinal fluid as one of the tissue types.

 

[August59]

I was referring to the CFI study.