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

R

Rrrr

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Otis said:
I think that was postulated earlier, but I read so much about this last night I'm a little fuzzy. It leads me to wonder if there was something of a larger calculated plan.
- First the AABB announcement to take credit for taking a "proactive" step - weren't we smart (NOT).
- Then this leak to spread it as something less than absolute fact to ease folks into this, if indeed it makes mainstream media.
- Finally (?) announce a journal publication, perhaps on a Friday afternoon to further soften the "blow"
The nature of news propagation now is that while things spread quickly across blogs, forums, etc., the same "news" continues to circulate over the course of months. My daily XMRV Google Alert continues to come up with the Science paper hits almost daily along with more current stuff. So while the news cycle is faster it is also more "sustained" over a longer period of time, at least by the second and third tier news sources which just regurgitate "news".

What we really need is good in-depth pieces from the WSG and the NY Times to really lay down all the facts (and of course Hillary) but I suspect we'll have to wait for a more formal announcement before that happens.
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yeah, i agree with all you wrote. also, recall that the AABB news first came out as the "personal" thoughts of Dr. Katz, before the AABB made it's recommendation. I did pitch this latest news to the NYT health reporter (forgot her name), Alison Young (USA Today health reporter), Julie Rovner (National Public Radio health reporter) and Ira Flatto (sp?) Science Friday host at NPR -- he had Dr. Coffin on months ago when xmrv first hit the news. No response yet.
 
D

dsdmom

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I just started getting nervous that once this news hits (if it does), it is going to be downplayed dramatically. They (meaning the government) don't want people to freak out so I wouldn't be surprised if they try to make it sound like no big deal. Like, yes, there is a retrovirus that is prevalent, but it's not that serious in MOST cases. You may get chronic fatigue and be a bit tired, but this isn't HIV or AIDS so don't worry.

And what about all the people who are carriers but don't know right now? If they find out they have it, I can see some of them saying - well, I have it and feel fine, so you musn't be that sick.

Does anybody follow what I'm trying to say here?
 
B

bullybeef

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I only discovered recently that 83,000 people in the UK were reported to have HIV in 2008, but 27% didn't know they were carriers. There is currently no random HIV test in the UK unless you are pregnant. Just imagine how many people they will find XMRV+ just by testing pregnant women in the future. There's going to be a lot of people in line for a huge shock.
 
Otis

Otis

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I'm quite sure the government will try to downplay this. Their success may depend on how well we fight back for additional funding for studies and treatment. We may be on the cusp of a tipping point where we have one chance to change perception plus attain funding for research, treatment and prevention.

To the XMRV+ who is healthy and has the nerve to say "I'm fine and you're (still) not sick", I'll say "I wouldn't wish this illness on you regardless how badly you treeat me but you could be a ticking time bomb for CFS, Fibro, Cancer, etc., and it's not just you but your family who is at risk as well. Please help by demanding funding for more research, treatment and prevention or make a contribution to the WPI today."
 
kurt

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natasa778 said:
not sure about that - Huber negative study has been doing the rounds for a while now, rejected for publication twice so far if sources are correct... someone said could be 'cos papers don't like to publish repeat negative studies, doesn't sound right to me (BMJ I'm sure would JUMP on the opportunity ;)) but then who knows might be true...
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That is exactly right, top journals do not like to publish repeat findings, although second tier journals might. The top journals have a mandate to publish articles with a high impact factor, meaning this is something that will impact a field, something new. This is not just their preference, they have editorial restrictions in place. They compete fiercely for their impact factor ratings. So saying an article was rejected by a top journal, when that article is a repeat finding, is no commentary on the quality of the study. This happens all the time, studies can be rejected for publication for many different reasons, such as being repeat findings in a high-impact factor journal, not being relevant to the journal's target audience, or simply being on a topic the editors do not find interesting or relevant.

Before getting too worked up about this latest leak, note that there may be a number of negative studies also in press that are equal or even superior in quality to the FDA study. This is about consensus being built, and we are still in the early stages of that process. There is still plenty for the labs to argue about even if one study does confirm the original Science findings.

Personally I don't care about the politics of this, they need to get the science right. Hopefully that is happening and all parties will be honest enough to say what they are really finding and what they believe is happening.
 
dannybex

dannybex

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dsdmom said:
I just started getting nervous that once this news hits (if it does), it is going to be downplayed dramatically. They (meaning the government) don't want people to freak out so I wouldn't be surprised if they try to make it sound like no big deal. Like, yes, there is a retrovirus that is prevalent, but it's not that serious in MOST cases. You may get chronic fatigue and be a bit tired, but this isn't HIV or AIDS so don't worry.

And what about all the people who are carriers but don't know right now? If they find out they have it, I can see some of them saying - well, I have it and feel fine, so you musn't be that sick.

Does anybody follow what I'm trying to say here?
Click to expand...

On the flip side, who knows, and who will ever know if the majority of XMRV-positive folks will ever get sick? :confused:

There may be other factors involved. And again, there may not.
 
Cort

Cort

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kurt said:
That is exactly right, top journals do not like to publish repeat findings, although second tier journals might. The top journals have a mandate to publish articles with a high impact factor, meaning this is something that will impact a field, something new. This is not just their preference, they have editorial restrictions in place. They compete fiercely for their impact factor ratings. So saying an article was rejected by a top journal, when that article is a repeat finding, is no commentary on the quality of the study. This happens all the time, studies can be rejected for publication for many different reasons, such as being repeat findings in a high-impact factor journal, not being relevant to the journal's target audience, or simply being on a topic the editors do not find interesting or relevant.

Before getting too worked up about this latest leak, note that there may be a number of negative studies also in press that are equal or even superior in quality to the FDA study. This is about consensus being built, and we are still in the early stages of that process. There is still plenty for the labs to argue about even if one study does confirm the original Science findings.

Personally I don't care about the politics of this, they need to get the science right. Hopefully that is happening and all parties will be honest enough to say what they are really finding and what they believe is happening.
Click to expand...

I have two questions about this study : is this the big DHHS study we've been waiting for? Actually I think not - my feeling is that that study was not ready altho I do remember that it was in several parts and its possible that the first part of it is done. If it is not the DHHS study its possible that it could be trumped by that study says that study seems to be the most comprehensive. However I would think the FDA is involved in the DHHS study. Does anyone know?

If this report is correct then we have another very highly regarded researcher in the fray - Dr. Alter who's work led to the discovery of hepatitis C. I wonder who else will show up? Dr. Gallo? (I imagine it burns Dr. Gallo deep inside when even the hint of a retroviral discovery shows up that doesn't have his name on it :))

Second any definitive study but hopefully point out where the other five or six researchers went wrong. Was it all due to lack of culturing - as Dr. Mikovits pointed out so long ago - or is it something else?
 
George

George

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Dr. Dodd's Slide 23

Does anyone know anything about the two bottom statements from this slide??


XMRV: current status
Controversial literature, inconsistent findings for viral markers in PCa, CFS, healthy controls; no causality established
Transfusion transmission theoretical
No intervention
Test methods not yet standardized
General concern when HIV seen as a model: species jump, potential for mutation
But, note apparent stability of viral genome to date
Specific interest, involvement from CFS affinity groups and their surrogates
CBS, Australia, NZ deferral for CFS
7 recent enquiries to ARC
Press release on efficacy of pathogen reduction
Click to expand...

Thanky, thanky
 
Cort

Cort

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I think but we will see is caution and lots and lots of it if the 4- 7 percent figure in healthy controls is validated. That will really drag in the public. If that happens then you'd certainly think that they try to prepare well in advance how they deal with a public that is all of a sudden worried about getting CFS or prostate cancer. The keynote from the officials will be we don't know if it causes anything (which is, of course still true- we'll just know its there (which is good enough for right now))

Of course all that news is really really good for us.

Can you imagine the public finally discussing chronic fatigue syndrome in a serious manner? Doctors everywhere are going to be hit with the question do I have chronic fatigue syndrome? Can I get chronic fatigue syndrome from kissing somebody? can I get chronic fatigue syndrome from sex? They and the public are going to have to learn about chronic fatigue syndrome.

A validated finding of XMRV in the blood supply and in CFS patients is, publicity wise, the best thing that could ever happen to CFS because people are going to have to be talking about what CFS really is.

You gotta think this is going to be on the news programs - Dr. Donnica get those vocal cords ready. If XMRV really works out, and I'm getting ahead of myself - ie is a cause of CFS - then how CFS was ignored, how a little research Institute created by the parents of a severely ill daughter with CFS made the big discovery while the NIH and CDC slept- that's book stuff! That's 60 minutes stuff. That's an inspiring David vs Goliath story. That will get around. and
 
E

Eric Johnson from I&I

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How solid's the source on the Huber paper being rejected?

Generally a journal doesn't want to waste space on a redundant paper that won't be cited much. But since this is by far the hottest biomedical issue in recent memory, I don't think that applies here. There will be no lack of attention paid to the paper, whatever it says. I think there is probably more of an issue over being mildly embarrassed if the paper is wrong. (Of course a negative paper could be technically right - ie, XMRV truly is not detectable with the techniques the paper employed - but it can still, at the same time, be "wrong" in a broader sense if XMRV really is present in CFS but was not detected.)
 
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