From the 1st annual XMRV conference

[George]

what Esther12 said, cause she's quick today! (grins)
but we knew that anyway, right?

 

[Esther12]

what Esther12 said, cause she's quick today! (grins)
but we knew that anyway, right?

I've been pretty good at taming my obsession today. I've only refreshed their twitter page about 10,000 times.

 

[bullybeef]

Please post your comments on the BBC F/B page: http://www.facebook.com/pages/BBC-News/112472135435050?v=stream&ref=search

 

[SOC]

How come they're announcing the negative results? Is it because this isn't news - we know that there are negative studies for XMRV, and releasing more of them isn't a problem? The Huber one still hasn't been published, so maybe there's not much interest in them?

We know all this, but many of the workshop participants don't. My guess is that they're doing a "state of the science" workshop -- presenting not only the positive studies, but negative ones, too. Most (all?) of the good scientists should be able to discern the good research from the bad. They've probably all heard somewhere about the negative studies, so it's important that they get the full story.

Besides, they'll need to know what was and wasn't working with regard to finding HMRVs.

 

[George]

Once we're on the NIH webcast page at http://videocast.nih.gov/ is there something else we need to do to access the webcast? I don't want to miss it because I didn't find a link, or something.

Hey guys once you are on the page you will see a little orange

Later Today

You may have to refresh the page around 5:10 or so but that will change to a BOX that says WATCH NOW

you click on that and the video will start.

 

[Otis]

Mary Kearney said it per the CC twitter.

PS Nice to see another lion here, Julius.

Julius, see posts #216, 218 (quoted below)

Kearney: It detects XMRV with great sensitivity & distinguishes background mouse DNA contamination "with 100% accuracy. #XMRV #MECFS

I took this to mean that the test distinguishes background mouse DNA contamination "with 100% accuracy. I think that speaks more to specificity, no?

Until the multi-center tests we won't have a validated assay that insurance will cover, I don't believe.

We also need to a better term than XMRV now.

The title of the talk was "Validation of XMRV single-copy assays (X-SCA) to detect xenotropic MLV-related virus in human blood products"

So it would appear they were looking for a single copy of XMRV and not any other MLVs?

So as I read this the assay can pick a single copy (in 1 ml?) of blood while being 100% able to distinguish XMRV from background mouse DNA contamination.

But trying to parse scientific data from tweets is tricky and I have 15 minutes to kill...

 

[Esther12]

We know all this, but many of the workshop participants don't. My guess is that they're doing a "state of the science" workshop -- presenting not only the positive studies, but negative ones, too. Most (all?) of the good scientists should be able to discern the good research from the bad. They've probably all heard somewhere about the negative studies, so it's important that they get the full story.

Besides, they'll need to know what was and wasn't working with regard to finding HMRVs.

Right - but they've just released new negative results on twitter, where as it seems like they're keeping quiet about the studies which sound positive (because of an embargo?). I just wonder if anyone knew why there'd be a discrepency here?

 

[Sasha]

Are you guys watching reruns or is MM still being made? We get it PBS (Public Broadcasting System) here, but they're always reruns.

(Oops! I'm OT again.)

Brand new series on at the moment! :Retro smile: John Nettles is coming up to retirement.

They rerun the old ones on daytime TV, though - I can never remember the plots so just as happy to watch the old ones as the new!

 

[ixchelkali]

Hey guys once you are on the page you will see a little orange

Later Today

You may have to refresh the page around 5:10 or so but that will change to a BOX that says WATCH NOW

you click on that and the video will start.

Thank you! You relieved my anxious mind. Don't want to miss anything because of brain fog.

 

[OneWaySurvival]

Once we're on the NIH webcast page at http://videocast.nih.gov/ is there something else we need to do to access the webcast? I don't want to miss it because I didn't find a link, or something.

Hi Ix! I've been watching that NIH site throughout the day (yeah, I'm a little eager), and I noticed that as each event "goes live", an orange button appears near the title that says "watch now" or something like that.

One other thing that kind of got lost in the shuffle here...did everybody notice VillageLife's awesome find on the CAA facebook page that Dr. Francis Collins was sitting on the front row during the CFS session today!?! And that Collins himself assured Bob and Rivka (through the other NIH official in the pre-conference meeting -- discussed in another General ME/CFS News thread) that "we are on track" and "things will happen" with regards to finding answers for us! I'm liking Francis Collins more and more.

 

[CateK]

Also sounds like you have to have RealPlayer installed on your computer. If you go to the FAQ, there's a link to download it free.

 

[ixchelkali]

One other thing that kind of got lost in the shuffle here...did everybody notice VillageLife's awesome find on the CAA facebook page that Dr. Francis Collins was sitting on the front row during the CFS session today!?! And that Collins himself assured Bob and Rivka (through the other NIH official in the pre-conference meeting -- discussed in another General ME/CFS News thread) that "we are on track" and "things will happen" with regards to finding answers for us! I'm liking Francis Collins more and more.

Yes, I'm impressed that he not only gave the opening remarks but has stuck around to hear some of the presentations. I think that's a good sign.

 

[George]

Hi Ix! I've been watching that NIH site throughout the day (yeah, I'm a little eager), and I noticed that as each event "goes live", an orange button appears near the title that says "watch now" or something like that.

One other thing that kind of got lost in the shuffle here...did everybody notice VillageLife's awesome find on the CAA facebook page that Dr. Francis Collins was sitting on the front row during the CFS session today!?! And that Collins himself assured Bob and Rivka (through the other NIH official in the pre-conference meeting -- discussed in another General ME/CFS News thread) that "we are on track" and "things will happen" with regards to finding answers for us! I'm liking Francis Collins more and more.

Didn't miss it. Isn't that great! Nobody actually expected FC to actually stay and be part of what was going on. It really shows how serious this is that he was there and stayed! Thanks for the reminder.

 

[Mark]

Things seem to have calmed down. This thread should be fine. Mark, are you still here to keep things nice?

I'm still here Julius but just to clarify one point, I personally have no big sticks to wield. Other members have already made all the relevant points:

• Take any debates - like the argument about Dr Huber - to a separate thread
• Resolve any personal arguments in Private Messages
  
• Don't take the bait: report any offensive posts and ignore them
• Anyone who continues to ignore these warnings will eventually be sanctioned by the moderators

As I and others have also tried very hard to explain, speculating about people's motives for finding the results that they found is completely counter-productive and based on nothing but supposition. My earlier post tried to explain why it is really no different to try to delve into someone's soul than to try to delve into their mind and figure out how they imagined themselves ill. In both cases: you just don't know, and you never ever will, whatever 'evidence' you think you have found.

 

[George]

CreekFeet rocks

#
ClevelandClinic‎: Jonas Blomberg from Uppsala University: No evidence for MLV-related viruses in Sweden. #XMRV #MECFS
Twitter - 4 minutes ago
#
‎
CreekFeet‎: @ClevelandClinic The same samples in which WPI did find positives? Any discussion of this? RK Institut plan to improve their methods? #xmrv

 

[ixchelkali]

10 more minutes...

Now it says "starting soon."

 

[anciendaze]

The orange button now says starting soon.

 

[George]

I'm still here Julius but just to clarify one point, I personally have no big sticks to wield. Other members have already made all the relevant points:



As I and others have also tried very hard to explain, speculating about people's motives for finding the results that they found is completely counter-productive and based on nothing but supposition. My earlier post tried to explain why it is really no different to try to delve into someone's soul than to try to delve into their mind and figure out how they imagined themselves ill. In both cases: you just don't know, and you never ever will, whatever 'evidence' you think you have found.

A huge Thank you and hugs to everyone who has worked to keep this thread about the data. I love you all! Big slobbery wet dog licks. (grins)

 

[SOC]

Right - but they've just released new negative results on twitter, where as it seems like they're keeping quiet about the studies which sound positive (because of an embargo?). I just wonder if anyone knew why there'd be a discrepency here?

Oh, I see what you mean. Sorry, I seem to be particularly brain-dead today.... so I guess I might still not be understanding, lol. Mama never told me there'd be days like this.

Think I'll just shut up and listen for a while.

 

[LJS]

Link to webcast realplayer stream file: http://videocast.nih.gov/ram/nci090810.ram