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CDC XMRV Retrovirology Study on CFS Published

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I think that it's not entirely surprising that the positive study has been withheld, or withdrawn, or postponed in order to make modifications for re-reviewing...

The negative CDC study tells us nothing new... it doesn't rock the scientific or establishment boat... it's not radical... it doesn't stir up a hornet's nest for the establishment or government...
So the CDC study can be published easily and quietly... no one is upset by it, except us, and everyone in the government quietly gets on with their business as if nothing is wrong.

Whereas, the positive study could be explosive... it really could be explosive, for so many different reasons... It will categorically confirm the WPI's findings to the establishment and to the scientific world, as scientific fact...
It will open the flood gates, for all sorts of things... research money will come pouring in... the public will have to be informed and will start asking questions... the blood supply will have to be screened... the media will go into a frenzy... professional reputations will be made or broken... The government will have to start taking serious action...

So, the government agencies will, understandably, want to make sure that this paper is solid... and extra checks are probably being made on the study... Remember how the WPI study had to be refined and resubmitted several times... the same is going on here... All the agencies probably want to make sure that this is water-tight... and that seems to be the information coming out about it at the moment... Extra peer reviewers are being brought in, and extra safeguards are being introduced into the study itself... All of this is so everyone can be absolutely certain that this study is rock solid, and that there aren't any holes in it... Just like the WPI study. (It's a shame that the negative studies don't get subjected to the same rigorous oversight, but at the end of the day, it will benefit us if the positive studies are absolutely rock solid and rigorous science.)

So the delay in publication isn't really surprising, all things considered.
 

jspotila

Senior Member
Messages
1,099
Cort, Dr. Vernon did a fantastic job with her quick response and she defiantly will not allow the XMRV research to die on the vine. I hope folks remember in all the e-mailing to send Dr. Vernon, and our own jspotila a thank you. Anytime there is controversy JSpot is on the spot for us. Thanks Jenny from a huge admirer, me!

Thank you, George and CBS!! I will give credit where it is due: Dr. Vernon and Ms. McCleary who are busting their butts to find out what is going on and push push push for funding and properly done studies and understanding of CFS at the highest levels in federal agencies.

As far as JSpot on the Spot - that spot is now bed! :In bed: Today's roller coaster took a lot out of all us, and I have to lie down before I fall down. But tomorrow is another day . . . .!
 

CBS

Senior Member
Messages
1,522
Thank you, George and CBS!! I will give credit where it is due: Dr. Vernon and Ms. McCleary who are busting their butts to find out what is going on and push push push for funding and properly done studies and understanding of CFS at the highest levels in federal agencies.

As far as JSpot on the Spot - that spot is now bed! :In bed: Today's roller coaster took a lot out of all us, and I have to lie down before I fall down. But tomorrow is another day . . . .!

Sweet Dreams! Job well done.
 

bakercape

Senior Member
Messages
210
Location
Cape Cod. Mass
That's it Relapse!!!

I'm going to bed. I can't take the stress and anger over this it's just getting to be too much for my system. I hope we get the truth some day soon from our government.:In bed:
 

serenity

Senior Member
Messages
571
Location
Austin
I think that it's not entirely surprising that the positive study has been withheld, or withdrawn, or postponed in order to make modifications for re-reviewing...

The negative CDC study tells us nothing new... it doesn't rock the scientific or establishment boat... it's not radical... it doesn't stir up a hornet's nest for the establishment or government...
So the CDC study can be published easily and quietly... no one is upset by it, except us, and everyone in the government quietly gets on with their business as if nothing is wrong.

Whereas, the positive study could be explosive... it really could be explosive, for so many different reasons... It will categorically confirm the WPI's findings to the establishment and to the scientific world, as scientific fact...
It will open the flood gates, for all sorts of things... research money will come pouring in... the public will have to be informed and will start asking questions... the blood supply will have to be screened... the media will go into a frenzy... professional reputations will be made or broken... The government will have to start taking serious action...

So, the government agencies will, understandably, want to make sure that this paper is solid... and extra checks are probably being made on the study... Remember how the WPI study had to be refined and resubmitted several times... the same is going on here... All the agencies probably want to make sure that this is water-tight... and that seems to be the information coming out about it at the moment... Extra peer reviewers are being brought in, and extra safeguards are being introduced into the study itself... All of this is so everyone can be absolutely certain that this study is rock solid, and that there aren't any holes in it... Just like the WPI study. (It's a shame that the negative studies don't get subjected to the same rigorous oversight, but at the end of the day, it will benefit us if the positive studies are absolutely rock solid and rigorous science.)

So the delay in publication isn't really surprising, all things considered.

that is the best i have heard yet to try to explain this. thanks Bob :)
 

muffin

Senior Member
Messages
940
Thank you to those that emailed Kathleen.Sebelius@hhs.gov -

Yes, she may not read even ONE of our emails, but as a smart person noted, her mailbox will be full and someone, maybe Sebelius, will have to see just why that is. Might force her or her undertypes to have a look at this issue that they may not know about.

Keep emailing her please. I just did and will again. We can NOT allow game playing with science.
 

Greggory Blundell

Senior Member
Messages
109
Location
New Jersey, USA
Sorry George, but tonight you seem to be my compass..So if we know - or at least with good cause strongly suspect - the CDC is being disingenuous with this study, to whom do we express those concerns since we can fairly safely assume (hyperbole in reverse?) that the CDC will most likely be disinclined to police itself? This is not merely a function of potential deception; there are victims, and more of them join this sad chorus of ours daily. And finally, didn't the journal the CDC study results appear in have a responsibility to asterek said report? As a matter of course? Or am I just being naive...
 

Levi

Senior Member
Messages
188
Saving the best for last . . .

Does not explain why both conflicting articles were put on hold by DHHS, followed by a mainstream article about the controversy in WSJ, and then only the CDC article was green-lighted for publication the very next day after the WSJ article, leaving the NIH/FDA article on hold.

It also does not explain Dr. Alter's apparent back-tracking and distancing from his study, which was apparently otherwise ready for publication. I can understand the extra peer reviewers since PNAS uses a different review system than is typical for most publications, but why not hold off on the CDC study as well, or get more peer reviewers involved in that?

Something is not quite right here.
 
Messages
5,238
Location
Sofa, UK
Thanks George, Dr Venon, JSpot, everyone...

Agree with Bob only thing that makes sense is the reasonable point that the positive finding is major, and in a way yes a higher standard of proof is required. And indeed why waste time on papers that have failed - publish, get that on the record, and move on. But the strange thing is, this paper was held for so long and then suddenly published at this time.

But still, if this sort of thing is "normal" and "what goes on behind closed doors", it doesn't make it right, and it doesn't make any difference what you call it, it's still concealing information from the public at the least, which only can be justified, surely, by the massive risk and implications that we agree are implied.
 

George

waitin' fer rabbits
Messages
853
Location
South Texas
Sorry George, but tonight you seem to be my compass..So if we know - or at least with good cause strongly suspect - the CDC is being disingenuous with this study, to whom do we express those concerns since we can fairly safely assume (hyperbole in reverse?) that the CDC will most likely be disinclined to police itself? This is not merely a function of potential deception; there are victims, and more of them join this sad chorus of ours daily. And finally, didn't the journal the CDC study results appear in have a responsibility to asterek said report? As a matter of course? Or am I just being naive...

Hey Greggory - Muffins ideal of writting Secretary of Health and Human Services Kathleen Sebelius sounds good to me. Might as well start at the top and let them know we're not by any means stupid. (At least not on our good days, Big grins) For the most part I think Bobs right on in saying that in the grand scheme of things it's just a small attempt at misdirection. (Look! Over there a blue jackass, opps our bad that's just Dr. Reeves on his way to retirement.) In the end it will all work out. I just keep waiting to for the dang "end"!
 

consuegra

Senior Member
Messages
176
From what I understand the authors of the NIH/FDA study have been asked to do "something more", some additional testing. The most likely scenario is that the NIH has been asked to test the 51 CFS samples of the CDC study using the NIH methods. This should take four to six weeks. The problem is that the samples of the CDC might have been altered in order for the CDC to get zero results. For instance maybe they killed the virus by putting the samples in a microwave. In that case the NIH would also get the "almost unattainable" zero positives. This situation gets more complicated as the CDC digs itself a deeper and deeper hole and soon they are going to fall into it - and the rest of us can shovel dirt and bury them.

Chris

http://cfspatientadvocate.blogspot.com
 

Otis

Señor Mumbler
Messages
1,117
Location
USA
Sorry George, but tonight you seem to be my compass..So if we know - or at least with good cause strongly suspect - the CDC is being disingenuous with this study, to whom do we express those concerns since we can fairly safely assume (hyperbole in reverse?) that the CDC will most likely be disinclined to police itself? This is not merely a function of potential deception; there are victims, and more of them join this sad chorus of ours daily. And finally, didn't the journal the CDC study results appear in have a responsibility to asterek said report? As a matter of course? Or am I just being naive...

No journal should have printed that nonsense. It does not speak well for their standards.
 

George

waitin' fer rabbits
Messages
853
Location
South Texas
Hey Chris where did you hear that the NIH is testing the CDC's stuff??? I don't think they can if the blood was tubed in heprin then it's no good for pulling DNA. But I could be totally wrong about that.

I'm thinking that the blah, blah, blah about why the NIH study hasn't been released is pure poo. Just another blue jackass so to speak, HHS is just stallin' for all they are worth. (grins)
 

Greggory Blundell

Senior Member
Messages
109
Location
New Jersey, USA
George and Otis, thanks to you both. Plot just seems to get nefariouser and nefariouser. Anyone still remember those Greek morality tales? Let's hope there's something to them; but let's not trust too much in that hope.
 

Hope123

Senior Member
Messages
1,266
Does not explain why both conflicting articles were put on hold by DHHS, followed by a mainstream article about the controversy in WSJ, and then only the CDC article was green-lighted for publication the very next day after the WSJ article, leaving the NIH/FDA article on hold.

It also does not explain Dr. Alter's apparent back-tracking and distancing from his study, which was apparently otherwise ready for publication. I can understand the extra peer reviewers since PNAS uses a different review system than is typical for most publications, but why not hold off on the CDC study as well, or get more peer reviewers involved in that?

Something is not quite right here.

Agreed. If it was something like having NIH test CDC samples, DHHS could have allowed publication of FDA/ NIH study and then followed this up as a separate article or "letter" (a quick short report). Having events happen in this matter and the sequence it happened in and the proliferation of excuses now coming out is not normal. I agree with the prior poster that this might not be a PNAS decision to withhold but the public reasons given out to supposedly calm us.
 

bullybeef

Senior Member
Messages
488
Location
North West, England, UK
It was suggested that even if the CDC study was neg, the fact the NIH/FDA seemed to think they had something, the FDA would have to approve a test to screen for XMRV before telling the public it’s in the blood supply. They would be pandemonium in hospitals if the blood supply was publicly compromised. Whom would make the decision to give a life saving transfusion knowing there is a good chance of infection?