WHERE ARE THE FDA AND NIH XMRV STUDIES? 5 August 2010 - It is TIME

[eric_s]

Somebody said (I wish I could remember who) that the conclusion of the paper will be the same. I think that's the biggest thing we care about. :

It was reported like that, i think, by Mindy Kitei on CFS Central, maybe also by the CAA on Facebook, i'm not sure about that, though. But that's all just "sources have said...". Still much better than nothing, but anything could happen.

I think we're all nervous to some degree. *grin* We're like first time mothers -- we know things should go just fine, but we've been listening to all the horror stories and we know it's not impossible for something to go wrong. Our baby is going to come when it comes, there is no real reason to expect things to go badly wrong. But the inability to exactly predict what's going to happen and when and the horror stories we know make us a little insecure. Perfectly normal, I'd guess.

Lol.. now that makes me feel very strange :tongue:

 

[SOC]

Heck, we have a disease where it's impossible to exactly predict what's going to happen. I know that makes me more anxious than my pre-illness baseline!

PNAS is known for breaking big medical stories. This one has the potential to be VERY big. Given the choice, even if the study was all buffed up, checked and triple-checked, and ready to go now, is early August the ideal time to bring it into the world? I'm guessing not. For maximum impact (which would be a GOOD thing, remember - lots of press coverage, lots of awareness being raised in the minds of laypersons as well as the scientific/medical community) - it would be better to bring the study out when universities are back in session & people are back from vacation.

Yeah, I don't want to wait another second either. But I think the ****storm will be SO much more entertaining to watch if it happens when everyone is back at their desks.

Yup! I'm thinking the same thing. Publication mid-late Aug would be prime for hitting the universities just when they're back in session. Maybe a month later to get everybody back from vacations and settled back into the grind.

I'm settling back in my recliner with my popcorn, waiting for this to break. I'm expecting it to be mighty entertaining.

 

[SOC]

It was reported like that, i think, by Mindy Kitei on CFS Central, maybe also by the CAA on Facebook, i'm not sure about that, though. But that's all just "sources have said...". Still much better than nothing, but anything could happen.
Lol.. now that makes me feel very strange :tongue:

LOL! Well, think of it as experiencing a bit of your feminine side. Now you can empathize with the women in your life. It'll probably make you a better husband. *grin*

 

[V99]

Shame we wont be able to see the faces of certain people.

 

[Sasha]

Yup! I'm thinking the same thing. Publication mid-late Aug would be prime for hitting the universities just when they're back in session. Maybe a month later to get everybody back from vacations and settled back into the grind.

I think they'd be nuts to delay publication any longer than necessary - publication is a race and a journal that misses out on being the first to publish a replication of the WPI findings would be kicking itself. University long summer vacations are for students - the staff only get normal vacation allowances, so although they might be away for a couple of weeks in the summer, that's it. Some will be at conferences - but what better place to discuss the latest findings?

I expect to see the Alter paper any week now. It's in the journal's interests to rush it out as fast as possible once the editor is satisfied the extra hoops have been jumped through.

 

[SOC]

I think they'd be nuts to delay publication any longer than necessary - publication is a race and a journal that misses out on being the first to publish a replication of the WPI findings would be kicking itself. University long summer vacations are for students - the staff only get normal vacation allowances, so although they might be away for a couple of weeks in the summer, that's it. Some will be at conferences - but what better place to discuss the latest findings?

I expect to see the Alter paper any week now. It's in the journal's interests to rush it out as fast as possible once the editor is satisfied the extra hoops have been jumped through.

Many researchers at universities work on different projects in the summer, or travel to other universities. They're not necessarily fully engrossed in their usual work. Here in the US, at least, the summer is a particularly bad time to try to find a professor to talk to. Sure, the university is open, but the profs are off doing their own research things and are not nearly as likely to be sitting in their offices keeping up on the literature as they will be from midAug to midSep.

I'm still betting on mid-late Aug and I'm not worrying until late Sep. Of course, I may change my mind as info changes. :Retro smile:

 

[urbantravels]

Also, academics are not the only audience that matters here. This study will be of interest to the general public, because it has a direct bearing on the safety of the blood supply.

I fully expect the mainstream media to pick it up and run like hell with it. (and for it to acquire distortions, exaggerations, decontextualizations, and quotes from "experts" who will be quite willing to pontificate about why they think the study does or doesn't matter.) Once the general public gets the whiff of panic that will inevitably get attached to the study - it's a retrovirus like HIV! It's out there in the blood supply! Where else is it? It causes cancer! EEEEEEK! - the phones will start ringing at doctor's offices, public health agencies, you name it.

It would be a shame to restrict the unfolding of this three ring circus to the limited news audience of the August "silly season."

 

[SOC]

It would be a shame to restrict the unfolding of this three ring circus to the limited news audience of the August "silly season."

Agreed. Absolutely. I wouldn't expect PNAS to postpone publication for months for that reason.

However, I think that normal processes have put the logistically realistic date for publication in Aug, regardless of university schedules. Given that it's coming out sometime in Aug, it could well behoove the publisher to put it in a Prime Time issue, rather than in one just before which could get lost in piles of things that came while researchers were elsewhere.

I don't have to like publishers logic, but I have to accept that it's a factor. :Retro smile:

 

[LaurelW]

Just got this message on CFIDSLink from the CAA:

Results of a study of XMRV in CFS patients conducted by researchers at the FDA and NIH are at press in the Proceedings of the National Academy of Sciences. This study is hotly anticipated and was the subject of several media articles in Nature, Science, the New York Times, the Wall Street Journal and the Independent last month after controversy arose about conflicting results reached by federal agencies. The authors, NIH officials and HHS staff have confirmed that the study will be published and they await critical evaluation of the data by the scientific community.

 

[urbantravels]

Sure. If I'm the editors of PNAS and I can realistically get the revised study to press for, say, August 17, but then I look at my editorial calendar and I think, hmm, maybe this story about South American jungle fungus can go on the cover August 17 and I can put XMRV on my cover Aug 24 or 31 instead - I might juggle things that way. Not months of delay, but a week or two.

 

[urbantravels]

p.s. Haven't we started a pool yet?

 

[SOC]

p.s. Haven't we started a pool yet?

Not that I've heard of, but I've been considering it. It might be a way to focus some of our impatient waiting tension on something other than bitching at each other.

 

[eric_s]

WOW... now i don't know if i will be able to sleep until it's out. "At press"! I hope this is not a misunderstanding or anything of that sort.

 

[Levi]

If we do a pool, make sure to include odds so I can lay off bets and come out ahead no matter what. Smart money is that the publication either has been completely spiked, or watered down to the point of no meaning.

There will be no study that says "the WPI study published in Oct. 2009 Science is replicated/reproduced by this new study and they were actually right about a XMRV/CFS connection" Trust me on this.

p.s. Haven't we started a pool yet?

 

[SOC]

If we do a pool, make sure to include odds so I can lay off bets and come out ahead no matter what. Smart money is that the publication either has been completely spiked, or watered down to the point of no meaning.

Define "smart" in this context.

There will be no study that says "the WPI study published in Oct. 2009 Science is replicated/reproduced by this new study and they were actually right about a XMRV/CFS connection" Trust me on this.

Exactly why should we trust you on this? Do you have some inside information the rest of us haven't heard? C'mon, share.

 

[urbantravels]

I see Eeyore has been heard from.

It's agreed then: the "never" bet will pay off when "never" rolls around.

 

[Grishnkh]

Exactly why should we trust you on this? Do you have some inside information the rest of us haven't heard? C'mon, share.

Moderator: Deleted insult towards another member

 

[Angela Kennedy]

This isn't an issue about 'trusting' Levi. From what I can see he thinks the papers going to spiked or watered down. His opinion. He's allowed to express.

I'm inclined to think the same. I hope I'm wrong, of course. You don't have to trust me - it's merely my own appraisal based on what's been happening so far.

But there's big alarm bells ringing for me.

Does that make me full of ****? Shall we all start saying that about everyone whose opinion differs from our individual opinions? Why should we 'trust' sickofscfs's opinion, for that matter? Or anyone here?

 

[V99]

We have no idea which way this will go. I agree with Angela. They have lied, manipulated and obstructed ME science before. The positive is that this is probably too big for them to hide.

 

[thegodofpleasure]

Filling the information Black Hole

Does that make me full of ****? Shall we all start saying that about everyone whose opinion differs from our individual opinions?

No, but it does come across as being just a touch paranoid.

The fact is nobody knows.

Consequently, whilst waiting, we choose to fill the information void with intrigue & speculation.
Some may choose to use this as an emotional prop, to sustain them through their long wait, while others spend the time arguing (sorry, debating !!) with one another.

Might we perhaps be better off maintaining a dignified silence ?
IMO, nothing we say or do (particularly on here) will make any difference to what happens in the short term, but if we haven't seen publication by mid September, then the CAA (as the primary advocacy group) must speak out strongly to demand it.

I'll now withdraw to my library for more quiet contemplation

TGOP