12:01am Tuesday, Special Episode of TWiV: Dr. Racaniello will post interview featuring Dr. Lipkin

currer

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I will be up quite naturally. Yes I get up very early - the time between 5am and 8am being the best part of the day.

I think quite probable that they have found something - I cannot understand the eagerness to free themselves of the embargo so immediately otherwise.

And SOC made a very good point, I think, how the authorities behave will reveal whether they respect the patients' suffering from this illness or not. Empty promises or spin will be rapidly detected by the online community.
 
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I just reached deep inside for some prime beaverfury gnosis, which can be defined as neither logic nor intuition.
A force beyond mere human reckoning or explanation. .....And ......i guess its about 12pm Australian time!

Feel free to correct. Beaver gnosis is not an exact science
 

urbantravels

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9:01 PM here on the West Coast - spiffy. Lately that's about the time I usually wake up from my afternoon nap. (I wish I was kidding about that.)

I'm comfortable that every effort has been expended on this study, that it will have been thorough and conscientious whatever the results turn out to be, and that there is no conspiracy to suppress information or anything like that.

It does make me uncomfortable to call the results of any study "definitive" since of course nothing in science can ever be "definitive." I think the choice of words is semantically inappropriate and does have a whiff of trying to "calm down" the community, which is unfortunate. I don't think this choice of words is a sign of anything sinister, just a misguided effort to be reasurring.
 

urbantravels

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p.s. With all our (justified) complaining about poor science journalism, nobody should be complaining about advance information being made available to the press. When science journalists are actually doing what they're supposed to be doing, they need the advance time to write up their early stories, get background and comments, etc., so they can file reasonably informative stories.

Otherwise, the story would first break with NOTHING but regurgitated press releases (instead of just mostly regurgitated press releases) because that's all anyone would have at the time the study is published.
 
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Maybe Dr Racaniello and Dr Lipkin just want to sit down and discuss the results of this research without the media being there. Maybe they wanted a more casual setting than a press conference so they can convey the findings in a manner more easily understood by the public and patients. I'm sure they are aware of how highly anticipated these findings are and I'm grateful they both are willing to stay up so late and get this information out as soon as possible.

I don't expect these two men to say much about how they view the patient community. This is not a test to see if these men have respect or concern for patients. I think they are going to talk about the science and how research can proceed forward. If they didn't care, Lipkin would not have agreed to oversee the study and Racaniello would not have arranged a TWiV episode at 1201 AM!
 

waiting

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Here's a CORRECTION to the time of the TWIV podcast -- (just posted to XMRV Global a few minutes ago)

"
Please note there has been a correction, Dr Racaniello's podcast will air at 12 noon and not 12:01 AM.

The embargo is lifted at 12:01 tonight.



http://www.research1st.com/2012/09/16/coming-soon-xmrv-results/

Coming Soon: Results of Multicenter Study of XMRV/pMLV
www.research1st.com
The much-anticipated results of a multicenter study of XMRV/pMLVs in CFS/ME are to be published on Sept. 18. Here are links for where to "
 

SOC

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Here's a CORRECTION to the time of the TWIV podcast -- (just posted to XMRV Global a few minutes ago)

"
Please note there has been a correction, Dr Racaniello's podcast will air at 12 noon and not 12:01 AM.

The embargo is lifted at 12:01 tonight.
Ah, that makes a lot more sense. :) Follow the official press conference with a more informal discussion with Dr Lipkin. It should bring out some of the scientific details that might not be addressed in a general presentation to the press. Nice decision on the part of Dr Racaniello.
 

Sasha

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This is up in a few minutes, isn't it? What do we have to click on? Anything? Or will it just start playing? I can't even see a mention of Dr Lipkin on the Twiv site.
 
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Full transcript now available courtesy of mecfsforums

A few excerpts, the first just because it made me laugh:

LIPKIN [talking about contradictory XMRV findings in CFS and Prostrate Cancer ]

It is imperative that we find ways to rapidly address and reconcile these kinds of findings with, you know, with other data, so that we can move on.

RACANIELLO:

Well, it seems that that requires people to work together and you were sort of a third party in this case, so you were able to get this to work, it’s probably why NIAID came to you in the first place, but when you have people having different findings, it’s hard to get them to talk to each other. So what do you do? You call ‘em up and say…?

LIPKIN:
How do you get to yes?

It’s very difficult. I find that breaking bread with a little bit of alcohol is quite helpful.

RACANIELLO:
Yes. What if you don’t drink?

LIPKIN:
Great. It’s even better.

Key quotes from and about Judy Mikovits
[RACANIELLO, reading a quote from JM in the press release [podcast recorded before press conference]

"I greatly appreciated the opportunity to fully participate in this unprecedented study. Unprecedented because of the level of collaboration, the integrity of the investigators, and the commitment of the NIH to provide its considerable resources to the CFS community for this important study. Although I am disapponted that we found no association of XMRV/pMLV to CFS, the silver lining is that our 2009 Science report resulted in global awareness of this crippling disease and has sparked new interest in CFS research. I am dedicated to continuing to work with leaders in the field of pathogen discovery in the effort to determine the etiologic agent for CFS."
Ah yes, the next quote is yours…

LIPKIN:
Well, that’s okay. The important quote is hers. And I think that takes an enormous amount of courage and class.

RACANIELLO:
It always does to admit you’re wrong. But that’s the key. That’s the key to moving forward. And of course, in your paper, the discussion begins “Our results definitively indicate that there is no relationship between CFS/ME and infection with either XMRV or pMLV. And that is, everyone signed off on that, you say.

LIPKIN:
They’ve all signed off on it. Everyone has read the press release.

RACANIELLO:
I would agree with XMRV for sure, and pMLV as far as you’ve shown here, but maybe somewhere else in the body there’s another virus that is…that is causing this… or some pathogen.
...
LIPKIN:
Oh, I am…I am heavily invested, personally and professionally, in that search. Not personally, but professionally.

Comprehensive plans for future CFS research
RACANIELLO:So you mentioned just a few minutes ago you hope this is your last association with XMRV. Yet, it sounds like you’re interested in CFS/ME. What’s the future…

LIPKIN:
I am. Indeed.

So, what we’re doing is…We have two efforts under way. First, with the Hutchins Family Foundation we have obtained some support to pursue pathogen discovery and biomarker discovery in people with CFS/ME and what we’ve done is go to all of these clinicians and others who have previously found agents using commercial laboratories and have constructed a Mass Tag system which allows us to rapidly look at their leading candidates. And in addition, we are going to be pursuing high-throughput sequencing on the Illumina platform. We’re also doing RNA Seq. We’re looking for RNA markers and we’re looking for LNC RNase and for any other insights we might have that would enable us to understand the pathogenesis of the disease or develop markers that could be used for diagnosing people or making predictions about who is likely to respond. We also have a large proteomics project associated with this. So…and I am, you know, completely unbiased with respect to what we find, so we’re using unbiased high-throughput sequencing proteomics, same sort of thing, so it really is a discovery platform.

RACANIELLO:
What about the microbiome? Could this have some role in the disease?

LIPKIN:
So, the microbiome, unfortunately, in this project, we were not allowed resources to do those kinds of collections, which I think is something that needs to be done.Under the auspices of the Hutchins Family Foundation, we are, indeed, collecting rectal swabs. So we would still be able to look at those types of materials.
 

SOC

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Lots of info in this big paragraph so I've separated out some sentences and bolded important bits for ease of reading. While there's nothing new here, it really lays out how much is being done with the HFF funding.

So, what we’re doing is…We have two efforts under way. First, with the Hutchins Family Foundation we have obtained some support to pursue pathogen discovery and biomarker discovery in people with CFS/ME and what we’ve done is go to all of these clinicians and others who have previously found agents using commercial laboratories and have constructed a Mass Tag system which allows us to rapidly look at their leading candidates. And in addition, we are going to be pursuing high-throughput sequencing on the Illumina platform. We’re also doing RNA Seq. We’re looking for RNA markers and we’re looking for LNC RNase and for any other insights we might have that would enable us to understand the pathogenesis of the disease or develop markers that could be used for diagnosing people or making predictions about who is likely to respond. We also have a large proteomics project associated with this. So…and I am, you know, completely unbiased with respect to what we find, so we’re using unbiased high-throughput sequencing proteomics, same sort of thing, so it really is a discovery platform.
I decided to break it out for ease of reading.
First, with the Hutchins Family Foundation we have obtained some support to pursue pathogen discovery and biomarker discovery in people with CFS/ME
Two critical things we need.

And in addition, we are going to be pursuing high-throughput sequencing on the Illumina platform
We’re also doing RNA Seq. We’re looking for RNA markers
we’re looking for LNC RNase
any other insights we might have that would enable us to understand the pathogenesis of the disease or develop markers that could be used for diagnosing people or making predictions about who is likely to respond.
They're not just hunting pathogens, but any clues or insights in several critical areas -- pathogenesis, and biomarkers for both diagnosis and treatment.
We also have a large proteomics project associated with this
Dunno what this means, but it sounds important. ;)
 

Bob

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Thanks for the info, SOC.

After listening to his interview, it seems that Lipkin is is carrying out a really comprehensive study, and doing all the essential tests in his pathogen study, and is looking for known and unknown pathogens. I was really impressed with what he said.

I might have got it wrong, but I think that the only test he said he isn't doing is exploring the microbiome (microbial flora.)
Although I think he said he is taking faecal swabs, looking for pathogens.

Proteomics is the study of proteins. It means that he'll be looking for unusual proteins, as well as DNA and RNA.
If unusual proteins are discovered, then I suppose they would need to find out where they are coming from, and that could lead to further discoveries.