FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

[CBS]

oh, (referring to comment about their being coathors)

As Emily says: http://www.youtube.com/watch?v=V3FnpaWQJO0

But, I guess I am thinking they might be listed if the FDA and NIH tested their samples? Or would they be listed even if FDA and NIH just used the WPI methods?

I thought I saw lots of names put on studies even if the contribution is minor.

But I know nothing of these sorts of things.

Tina

Tina,

I have to agree with Cort on this. It is far better for everyone (including - especially? - the WPI) if the WPI is no where to be seen on the first replication(?) studies. XMRV isn't something the WPI has proprietary claim to (at least to my knowledge). This doesn't take anything away from the WPI, Cleveland Clinic, NCI study. To have principle authorship on the Science paper, to be at the front of that list and to have brought XMRV onto the world stage is in itself a major accomplishment.

I suspect that the WPI has continued to work on whatever they could and that a replication of their results will open doors for them. By definition, you can't independently confirm your own work on this sort of thing. And independent confirmation is an essential step.

 

[akrasia]

Apologies if this has already been posted here. Annette Whittemore wrote this on facebook:

Gracenote,

My take on it is that it was deliberately linked to on wpi's Facebook page, probably with the consent of of both Annette and Judy, if not Alter himself. They put it out there long enough for it to go"viral" as Tina said and then "pinned" it on Andrea. It really strains credulity that neither Annette nor Judy had any knowledge of it and Andrea, acting alone, informed neither of them.

 

[rebecca1995]

Are the CDC inappropriately named? Do they aim to control disease, or information?

LOL, Mark--you've got that right!

 

[Lynn]

Originally posted by Koan
http://www.mmdnewswire.com/xmrv-9040.htmlhttp://www.mmdnewswire.com/xmrv-9040.html
source of item

Yes, but what is MMDNewsWire?

Lynn

 

[SunnyGal]

Gracenote,

My take on it is that it was deliberately linked to on wpi's Facebook page, probably with the consent of of both Annette and Judy, if not Alter himself. They put it out there long enough for it to go"viral" as Tina said and then "pinned" it on Andrea. It really strains credulity that neither Annette nor Judy had any knowledge of it and Andrea, acting alone, informed neither of them.

I don't see any reason that WPI would have to leak this info out on FB. Would WPI be the only people who knew about it so they had to link to it on Annette's FB page to get the word out? I can't imagine that it wouldn't have shown up eventually if not today on web searches and alerts. So, seems odd to me that WPI would need to risk doing this, after all that they've worked so hard to do, including not leaking other info ahead of time. Especially since this "news" is a leak itself, not even any official info. I doubt the WPI would intentionally risk anything to do that.

Just my take. Sunny

 

[judderwocky]

I don't see any reason that WPI would have to leak this info out on FB. Would WPI be the only people who knew about it so they had to link to it on Annette's FB page to get the word out? I can't imagine that it wouldn't have shown up eventually if not today on web searches and alerts. So, seems odd to me that WPI would need to risk doing this, after all that they've worked so hard to do, including not leaking other info ahead of time. Especially since this "news" is a leak itself, not even any official info. I doubt the WPI would intentionally risk anything to do that.

Just my take. Sunny

I can't imagine it would be the kind of decision someone would make completely by themselves

 

[SeaShel]

Gracenote,

My take on it is that it was deliberately linked to on wpi's Facebook page, probably with the consent of of both Annette and Judy, if not Alter himself. They put it out there long enough for it to go"viral" as Tina said and then "pinned" it on Andrea. It really strains credulity that neither Annette nor Judy had any knowledge of it and Andrea, acting alone, informed neither of them.

If you follow that page at all, it doesn't strain credulity. Andrea posts 90% or more of the posts. Oftentimes you can tell how poorly she's feeling by the typos and content of the post, so you know it's Andrea.

I'm not making my case well at all, maybe someone else will chime in, but really - if you've been on that feed for awhile, you know that it's Andrea and that Annette isn't too involved in the FB stuff at all. And certainly not Dr Judy.

Shelley

 

[cfs since 1998]

My take on it is that it was deliberately linked to on wpi's Facebook page, probably with the consent of of both Annette and Judy, if not Alter himself. They put it out there long enough for it to go"viral" as Tina said and then "pinned" it on Andrea. It really strains credulity that neither Annette nor Judy had any knowledge of it and Andrea, acting alone, informed neither of them.

I'm sure Judy and Annette do not watch the Facebook page. What strains credulity is the idea that Andrea consults with them every time she makes a post. Judy and Annette have better things to do than sit around on Facebook or give Andrea "permission" to post news articles.

Linking to a news story on another site that contains leaked information is not the same as leaking it yourself. WPI did not leak anything. They linked to a news story not only on another site but in another country!

 

[usedtobeperkytina]

Well, I wasn't saying what I wanted, I was saying what I thought might be the case.

I thought WPI was sharing their samples to be independently tested, also considered verification.

So are you saying that if WPI sent samples to another lab and that lab saw it at same rate, in the same samples, that wouldn't be independent replication or verification?

I am sorry, I thought that was part of what WPI was doing.

Tina

 

[SeaShel]

What CFS since 1998 said.

I knew someone's brain would be working better than mine.

 

[Robyn]

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[CBS]

Well, I wasn't saying what I wanted, I was saying what I thought might be the case.

I thought WPI was sharing their samples to be independently tested, also considered verification.

So are you saying that if WPI sent samples to another lab and that lab saw it at same rate, in the same samples, that wouldn't be independent replication or verification?

I am sorry, I thought that was part of what WPI was doing.

Tina

Hi Tina,

This is a bare bones description of the process but independent replication would mean that the samples hadn't come from, or been through, the WPI labs as that wouldn't address the issue of possible cross contamination of samples (I know that this question has been beaten to death but not crossing this 't' would severely weaken a "replication" study). The preliminary step of validating a methodology might involve samples from the WPI (eg. "we found what the WPI found using the same/similar techniques in the same samples"). At this point (having shared positive samples and answering questions about their methodology and cohort selection) the WPI has done all that it can. The next step of using that methodology (assuming that methodology was validated in this manner) to independently confirm the prevalence of XMRV in CFS or controls would require a new set of independent subjects (strengthening the conclusion that XMRV was in either the CFS or healthy/asymptomatic population at large - not just those in WPI samples). All of this gets you to confirming an association. Then its on to assessing the nature of that association, perhaps causation or co-infection.

 

[Daffodil]

i know that all of this will translate into testing of donor supply and accelerated vaccine research....but what about us? do you guys think this news will rush new medicines to the market?

 

[julius]

i know that all of this will translate into testing of donor supply and accelerated vaccine research....but what about us? do you guys think this news will rush new medicines to the market?

Definitely, that's completely money driven....and there's some money to be made here. It'll be a gold rush.

I'm excited too that it will bring easy access to testing very quickly.

 

[Eric Johnson from I&I]

Yes, if this is confirmed there's a positively ungodly mountain of money to be made. That's a very good thing. Some diseases present a small profit opportunity and ours presents a very, very large one. That means drug companies will be spending vast amounts on research. They tend to do their own work. They would have done their own investigation of the Mikovits paper to see if it is true. So, assuming now that it is true, some of them have surely known it was true for some months now. (But their findings are secret for obvious reasons.) And as soon as they saw that it was real, they started a vast research effort.

 

[alex3619]

Hi Daffodil

We know that some existing medicines appear to work on XMRV. New medicines, even if rushed, will take maybe three to five years. Without a rush it could take twenty. The first step, at least in the near term, is for a well organized and designed study to prove that some existing drugs work - that should be enough to get doctors on board and silence critics at the insurance companies (mostly). Those who have already started antiretroviral therapy might feel a lot more validated now.

Bye
Alex

i know that all of this will translate into testing of donor supply and accelerated vaccine research....but what about us? do you guys think this news will rush new medicines to the market?

 

[usedtobeperkytina]

Alex, is that true even if the drug has already passed some phases of study, having been tested in HIV patients for safety?

I think I remember someone saying, was it Mikovits, that it will be even quicker because they just have to pull them off the shelf. No development, already tested for safety?

I just wonder if your figures took that into consideration.

Tina

 

[judderwocky]

well, a lot of those drugs have already gone through safety rounds because they are HIV meds... so that will speed some things up... also MLV's were one of the original viruses they used when searching for anti HIV drugs... so there are, I believe, a whole bunch that have been shelved that didn't work on HIV, but would theoretically finally have a use. those would probably stlill have to go through safety testing ...but at least they don't have to be "discovered" first... that cuts down on research costs considerably... but you are going to be seeing a lot of groups looking at this and so i imagine they will probably be able to pull together a large research crowd and funding quickly...

 

[judderwocky]

also... did anybody notice that this guy Dr. Alter... was the guy that discovered the virus for Hep C.... talk about credibility.

 

[SunnyGal]

I can't imagine it would be the kind of decision someone would make completely by themselves

Someone brain foggy could easily do something without thinking it through or checking with anyone first.