Lipkin XMRV study to be released June 30th

acer2000

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Those questions posed by asleep and reposted here are all questions I have had since the beginning of this research almost 3 years ago. Speculation about politics aside, even if it turns out "XMRV" strict definition was a detour, 90% of those things listed are objectively observable phenomena that are still unanswered for.
 

ukxmrv

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Eco, are you able to confirm that none of the reseachers involved with the Lipkin study have had to sign an secrecy or non-disclosure agreements? Can you also confirm that they have had an equal hand in designing the study.

These are genuine questions I've been meaning to ask BTW and not intended to upset anyone. If you don't know please don't worry.
 

Bob

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Eco, are you able to confirm that none of the reseachers involved with the Lipkin study have had to sign an secrecy or non-disclosure agreements? Can you also confirm that they have had an equal hand in designing the study.
My understanding was that Lipkin included all the researchers in the process of methodology design, such that they were all happy with it, and that all researchers had to sign the usual sort of non-disclosure agreements.
 

RustyJ

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To date, I have not encounter any objections by any of the researchers on this project. Eco
So? Eco, simply to repeatedly throw this sort of comment into discussions, as though it carried great weight and conveyed your familiarity with those researchers only on one side of the debate, does nothing for your arguments and often detracts from more valid points you may make (as their veracity cannot be confirmed, but forces posters to assess your motivation for making them) but more so because it brings to mind the oft used argument that fly spray keeps tigers away, because you don't see any tigers. Indeed the fly spray analogy aptly describes the frantic efforts of the researchers who focus on VP62 rather than seriously look for MRVs. Coincidentally, it is these same researchers you pay deference to.
 

jace

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More news, perhaps on the Lipkin Study, perhaps not - you make up your own minds.
http://www.ageofautism.com/2012/07/a-time-for-prayer.html


A good and honest scientist who has given more than forty years of his life to the service of public health is in peril. I understand that we in the autism and other disease communities may look at the medical establishment as a monolithic entity, but this is not true. Just as there were people in the communist system who knew how thouroughly rotten that system was and desired to do good if given a chance, there are similar people in our medical system.

You ask what threat this scientist finds himself under and I will tell you. They have threatened to fire him and take away his pension. I don't know if they can do it. I don't know if it's a bluff. But it has been threatened. He is supposed to lend his name to a study, the conclusions of which he does not support. It is an assault not just upon the millions of people who suffer from various afflictions, but also on the integrity of scientific research in our country.

For those who would perpetrate injustice I ask you to reconsider. You do not want to be on the wrong side of history. There are millions of people in the various disease communities who will not forget this planned destruction of an honest scientist. And do not make the mistake of believing we are as weak as we have been in the past. We have learned your methods and we are ready to confront you. I ask that you consider the positive reasons you went into science, the desire to advance the health of the human race, and turn away from this path which seeks only to protect reputations and bureacracies, rather than those who suffer.

I ask the members of the various disease communities for your prayers for this good scientist who finds himself under threat. I am giving you something specific to pray about. I don't know if the prayers will give him strength to endure what may come, or turn away the hand of those who would seek to do evil to him.

Please offer your prayers for this good man of science so that he may help our children and those of other disease communities who suffer with their afflictions

A tweet from Hillary Johnson:

@oslersweb: Sounds like fix is in on Lipkin study. Instead of prayer, how about Occupy NIAID? Remember, all roads lead to Fauci
 

Bob

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But there isn't actually any substance in that, is there? Who is the scientist? What is the source of the information? What, allegedly, does the scientist not agree with? At the moment, it's just tantalising and unsubstantiated tittle-tattle/rumour/gossip. I find it a bit annoying and insulting actually. What's the purpose of giving us a bit of unsubstantiated tittle-tattle like that, without any details to back it up?

Every one involved in the study knew what they were signing up to. They are all highly capable adults, and they signed a contract which said that they had to agree, at least in public, with the outcome of the study.

The contract could mean, for example, that if they don't find XMRV in the study then all the participants have to agree that XMRV wasn't there to be found.

As a patient, I knew this, so if anyone signing the contract didn't know that, then they were pretty naive.

I also 'knew' (an educated guess) that they wouldn't find XMRV in convincing enough proportions for it to be a positive study. (Although, I'm also guessing that they might find a variety of MLV-related viruses, but not in high enough numbers for it to be a positive study. So there could be some very interesting results, even if it is a 'negative' study. And it will be interesting to see the results of Lipkin's deep sequencing.)

The contract only means that they have to publicly agree with the results of this isolated study, or at least they can't dissent from it. They don't have to sign up to any wider implications of the study. So signing up to the study doesn't stop any of the researchers doing further MLV-related research in the future.

I expect there to be unlimited MLV-related research in the future, just as MLV-related research has continued to be published recently. For example, looking at an XMRV-related virus (preXMRV2) 'evolving' and being transmitted in wild mice populations:
http://forums.phoenixrising.me/inde...n-laboratory-and-wild-mice.18402/#post-280484

So science will move forwards properly, in my opinion, whatever the outcome of this study.

Personally, I can't buy into any conspiracy with respect to Lipkin. I honestly believe that he will have carried out the study with utmost integrity. He has every reason to. But more than that, Mikovits and colleagues will have carried out their own research to the best of their abilities, and my understanding is that they were consulted and agreed with the methodology from the beginning. The only way I can see that the study could have been corrupted is if there was an active conspiracy to thwart the study, by an outside agency. Well, if that was the case, then we can't do anything about it, but I don't believe that is the case. The truth would have to come out in the end, and I personally think we are moving towards the truth about MLVs and MRVs slowly but surely, as per the paper I gave a link to, above.
 

currer

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But if the public conclusions are negative (even if in private some scientists have reservations of their own) it will block research funding into this field. Because those with power will still be controlling public statements about XMRV. (Like the forcible retraction of the Science Paper and the Lo and Alter paper)
 

currer

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It does seem that the Lipkin study may have run into problems. I was at the Invest in ME conference when Peterson confidently told us the result would be published on June 30th......but it is still not out.
 

currer

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This is an obvious question but I cant remember if it has been asked.

Why should all those involved in the Lipkin study have to come to a jointly agreed conclusion?
 

Bob

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But if the public conclusions are negative (even if in private some scientists have reservations of their own) it will block research funding into this field. Because those with power will still be controlling public statements about XMRV. (Like the forcible retraction of the Science Paper and the Lo and Alter paper)
Yes, I agree that a negative result will block research funding, but that was always going to be the case, and I think there's absolutely nothing that we can do about that, except to continue to explore the science.
And even if some of the scientists were to publicly dissent, Lipkin's voice would carry more weight with the govt. funding agencies anyway, so I don't think it would make much difference, if any.
But let's wait to see what the results are. We don't actually know what the situation is yet, and the Age of Autism blog doesn't shed any light on the subject, but only heat.

It does seem that the Lipkin study may have run into problems. I was at the Invest in ME conference when Peterson confidently told us the result would be published on June 30th......but it is still not out.
Publishing dates are rarely fixed in stone. There might be last minute changes to the text. Peer review might take longer than expected. The peer reviewers might ask for extra information. etc. etc.

This is an obvious question but I cant remember if it has been asked.

Why should all those involved in the Lipkin study have to come to a jointly agreed conclusion?
I agree that there is a case to be made that these gagging contracts should not be used.
I don't know how they decide the final wording. Is it done on a majority vote involving all the co-authors?

Sorry if you object to my post Bob. We're all hanging on for scraps...
Hi Jace, I don't object to your post at all. You were helpfully sharing information. I was just irritated by the Age of Autism blog, as it doesn't tell us any facts, and doesn't add anything useful to the field of MLVs.
 
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I agree that there is a case to be made that these gagging contracts should not be used.
I don't know how they decide the final wording. Is it done on a majority vote involving all the co-authors?
.
In all scientific publications, all of the authors have to approve all of the text. Now, of course people discuss internally and settle minor things (for instance by voting), but if something is really unacceptable for a single scientist, he (or she) shouldn't put his name on the paper.

And that is also what is the problem with studies like these, involving many, "competitive" teams: you have to agree on some kind of ruleset, and agree to draw certain conclusions given certain results beforehand . If you don't, it is very likely, because (at least) one team will "lose", that some scientists will try to backtrack and reject the study on the basis of *something* (and it is always very easy to think of *something* in hindsight). It is what happened in the past (for instance, Robin Weis mentions the SV40 multi-lab study as an example), and (I guess) it is what Lipkin is/was trying to prevent.

The study would lose a lot of credibility with patients if Mikovits and/or Ruscetti weren't co-authors. This would give them a lot of unreasonable "negotiating power". For instance, suppose that the results were dramatic, then they still could demand that the conclusion would only be something like "there is no conclusive evidence" or else they would not support the paper. Again, to prevent this sort of thing, Lipkin (reportedly) tried to do everything like Mikovits/Ruscetti wanted it to, but in return they would have to back the results 'no matter what'.
 
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It does seem that the Lipkin study may have run into problems. I was at the Invest in ME conference when Peterson confidently told us the result would be published on June 30th......but it is still not out.

I have recently been told that the Lipkin study will be published at the end of July so let's keep our hopes for that much anticipated event.
 

Bob

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In all scientific publications, all of the authors have to approve all of the text. Now, of course people discuss internally and settle minor things (for instance by voting), but if something is really unacceptable for a single scientist, he (or she) shouldn't put his name on the paper.

And that is also what is the problem with studies like these, involving many, "competitive" teams: you have to agree on some kind of ruleset, and agree to draw certain conclusions given certain results beforehand . If you don't, it is very likely, because (at least) one team will "lose", that some scientists will try to backtrack and reject the study on the basis of *something* (and it is always very easy to think of *something* in hindsight). It is what happened in the past (for instance, Robin Weis mentions the SV40 multi-lab study as an example), and (I guess) it is what Lipkin is/was trying to prevent.

The study would lose a lot of credibility with patients if Mikovits and/or Ruscetti weren't co-authors. This would give them a lot of unreasonable "negotiating power". For instance, suppose that the results were dramatic, then they still could demand that the conclusion would only be something like "there is no conclusive evidence" or else they would not support the paper. Again, to prevent this sort of thing, Lipkin (reportedly) tried to do everything like Mikovits/Ruscetti wanted it to, but in return they would have to back the results 'no matter what'.
Yes, I do understand that there are reasons to use that sort of contract, such as: to avoid a very messy fight, after publication, between the various factions; and so the paper is not undermined by one or two disgruntled participants who didn't achieve their desired outcome.

But there is still a case to be made for not using such clauses: If we want openness and transparency in science, are such clauses helpful?

But having said that, I suppose there has to be a majority voting type of approach to the interpretations to this sort of study, or it runs the risk of not getting completed, just because one participant disagrees with everyone else.

I suppose if each of the participants has the right to withdraw their name from the study without penalty, and then has the right to dissent from the conclusions, then that might be perfectly reasonable and adequate.

We don't know any of the details of this study, which is why the Age of Autism blog looks like it was just designed to stir up trouble, to me. We don't know any details of the contract or the final results. Every participant may have the right not to sign up to it.

In any case, they all knew what they were signing up to, so I don't see how anyone can complain about the process at this late stage, if they didn't complain earlier.
 

jace

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Hillary Johnson ‏@oslersweb
Sorry to confuse or raise blood pressure/ire. Blogs are, well--blogs. Impulsive tweets on these important matters? Worse. Lesson learned.