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

[eric_s]

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.

What alarm bells?

I have no idea neither, how this will turn out. The only hint is what Mindy Kitei reported some time ago, but that's no guarantee of any kind.

What gives me some hope is that the info was leaked before. If the paper now was published with a new conclusion Dr. Alter would not be looking very good. He has had such a great career. Would he really want this? To look like some sort of amateur that has made a major mistake and was only kept from publishing a wrong study by his superiors?

It's just hard to imagine that there will be a study that gives us all we want and starts this big avalanche that we are waiting for, but in my opinion, it seems more likely than the other outcome.

 

[V99]

The hold put on the study was a big alarm bell.

 

[eric_s]

Sure, but i was thinking, maybe there's something new.

 

[V99]

There is nothing new, we just know the DHHS put the paper on hold when it was about to be published. Although we are being told the paper is in press, again because of where the information is coming from, we have no idea what will be the outcome. It's also obvious that they are trying to shut the WPI up, and make them a smaller voice in this issue. They can only regain our trust by repeatedly doing the right thing. This may take some time, and they haven't even started yet.

 

[SOC]

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?

Try reading the posts, Angela. Levi made it "an issue about trusting Levi".
Levi said,

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.

He stated his opinon as fact, "There will be no study...." Then he said, "Trust me on this.". I simply asked why I should trust him. I see no reason to trust people just because they say, "Trust me on this." I asked if he has new information. That's all.

I in no way implied he wasn't allowed to have his opinion. He's more than welcome to his opinion and to express it. You have the same opinion as Levi. Fine. You, however, are not telling me to trust you.

I never asked anyone to trust me, much less told them to. I have always stated my opinion as an opinion based on experience which I try to share when I give my opinion. I don't expect people to believe anything simply because I say so.

Frankly, I do think that people who arrogantly say, "Trust me on this" without providing any support for their declaration of fact are full of &%. And it has nothing to do with their opinion on the subject.

 

[V99]

I don't think Levi is being arrogant. Unfortunately for him, experience has been bitter. As we all know history can be a great educator, we ignore it at our peril.

 

[SOC]

I don't think Levi is being arrogant. Unfortunately for him, experience has been bitter. As we all know history can be a great educator, we ignore it at our peril.

I believe it is arrogant to state your opinion as fact and then say, "Trust me on this". If the opinion was identical to mine, I would still consider the statement to be arrogant.

 

[V99]

It's only a belief in your statement, not an attitude of superior intellect. I don't think he gets any pleasure from it. It's obvious he want's things to be entirely different.

 

[Grishnkh]

Conjecture is never to be trusted, trust me on this.

 

[anciendaze]

Damage Control Strategy

My take on the delay is that the CDC group revealed a little more than intended by calling their delay "a strategic pause". This looks like it was planned.

That group completed the paper back in February before their CFS group changed leadership, as shown by the list of authors. They then sat on the results while others produced negative studies and gave no hint that they were holding such a study when Alter and Lo gave them a presentation. When it looked like Alter's work might actually get published, they panicked and went up the HHS hierarchy in an effort to stop it. They failed conspicuously in that, even attracting unwelcome attention to the leaked results. However, they did succeed in getting him to agree to run more tests. This put him back in the review process. (Forcing him to insert a disclaimer would have had the same effect.) The speed of publication in top journals is glacial. A delay until late August would be predictable. I think this is what they were planning. As soon as he had started to comply with this agreement, they released their own study without change. Because it was already past peer review it was published immediately. At this point Alter could figure out that he had been had.

If the paper comes out and conflicts with slides from the leaked presentation, you can expect an even bigger uproar from journalists who have been following this. The question now is whether the opposition thinks this is worse than having a positive study. I'm betting they will switch from "the results are entirely negative" to "these results are uncertain and controversial" as the least damaging response.

They have already violated an unwritten rule by invoking administrators to decide a scientific question. They may very well have violated another rule by compromising the system of anonymous peer review. (They had the time and contacts.) If they are too heavy handed, they will provoke a backlash from prominent scientists. This would bring a relatively obscure technical dispute (as far as the public is concerned) to front pages and evening news.

 

[SOC]

My take on the delay is that the CDC group revealed a little more than intended by calling their delay "a strategic pause". This looks like it was planned.

That group completed the paper back in February before their CFS group changed leadership, as shown by the list of authors. They then sat on the results while others produced negative studies and gave no hint that they were holding such a study when Alter and Lo gave them a presentation. When it looked like Alter's work might actually get published, they panicked and went up the HHS hierarchy in an effort to stop it. They failed conspicuously in that, even attracting unwelcome attention to the leaked results. However, they did succeed in getting him to agree to run more tests. This put him back in the review process. (Forcing him to insert a disclaimer would have had the same effect.) The speed of publication in top journals is glacial. A delay until late August would be predictable. I think this is what they were planning. As soon as he had started to comply with this agreement, they released their own study without change. Because it was already past peer review it was published immediately. At this point Alter could figure out that he had been had.

If the paper comes out and conflicts with slides from the leaked presentation, you can expect an even bigger uproar from journalists who have been following this. The question now is whether the opposition thinks this is worse than having a positive study. I'm betting they will switch from "the results are entirely negative" to "these results are uncertain and controversial" as the least damaging response.

They have already violated an unwritten rule by invoking administrators to decide a scientific question. They may very well have violated another rule by compromising the system of anonymous peer review. (They had the time and contacts.) If they are too heavy handed, they will provoke a backlash from prominent scientists. This would bring a relatively obscure technical dispute (as far as the public is concerned) to front pages and evening news.

I'm inclined to agree with you. I still get stuck, though, trying to figure out what the CDC actually thought they were going to accomplish with their shenanigans. Delay the paper, yes, but to what end ultimately? Or did they really think they could prevent the publication of a paper by a major researcher? Perhaps they could have prevented the research in the first place, but stopping the paper after positive peer-review seems unlikely unless they had evidence of major wrong-doing in the research itself (falsified data, for example).

The best I can come up with is the DHHS' need to get some things in place to deal with any fallout that might occur. If blood supply testing was nearly ready, then delaying publication of the first validation paper until after DHHS could say the blood supply was safe would make sense, I suppose. I don't see how that helps Reeves et al, though.

 

[anciendaze]

I'm inclined to agree with you. I still get stuck, though, trying to figure out what the CDC actually thought they were going to accomplish with their shenanigans. Delay the paper, yes, but to what end ultimately? Or did they really think they could prevent the publication of a paper by a major researcher? Perhaps they could have prevented the research in the first place, but stopping the paper after positive peer-review seems unlikely unless they had evidence of major wrong-doing in the research itself (falsified data, for example).

The best I can come up with is the DHHS' need to get some things in place to deal with any fallout that might occur. If blood supply testing was nearly ready, then delaying publication of the first validation paper until after DHHS could say the blood supply was safe would make sense, I suppose. I don't see how that helps Reeves et al, though.

A term I picked up from a researcher in artificial intelligence applies to a great deal of natural intelligence (and stupidity): bounded rationality. He had a problem with programs that played chess pushing the certainty of losing a game over the bound they could explore with the computational power they had. People tend to do this as well. Organizations often function at the level of their less acute members; if they were too clever, everyone involved wouldn't be able to follow the reasoning. Buying time, obscuring issues, calling in favors and controlling spin are typical organizational responses to unwelcome news. I think there are plenty of subtle signs this is going on.

I wouldn't be surprised to learn there is an effort like the 'ministry of truth' in '1984' working on a rewrite of history.

 

[V99]

I think your right anciendaze. Somehow I think they did what they always have done, but never weighed the consequences in this instance.

 

[markmc20001]

deleted my post, but lets just say it's........................frustrating.....................

 

[Gemini]

Buying time, obscuring issues, calling in favors and controlling spin are typical organizational responses to unwelcome news. I think there are plenty of subtle signs this is going on.

In addition to managing public reaction, wonder of HHS is planning to do anything that helps patients/physicians?

Would be nice...

Gemini

 

[SOC]

A term I picked up from a researcher in artificial intelligence applies to a great deal of natural intelligence (and stupidity): bounded rationality. He had a problem with programs that played chess pushing the certainty of losing a game over the bound they could explore with the computational power they had. People tend to do this as well. Organizations often function at the level of their less acute members; if they were too clever, everyone involved wouldn't be able to follow the reasoning. Buying time, obscuring issues, calling in favors and controlling spin are typical organizational responses to unwelcome news. I think there are plenty of subtle signs this is going on.

I wouldn't be surprised to learn there is an effort like the 'ministry of truth' in '1984' working on a rewrite of history.

Yep, that does explain it. I have to keep reminding myself that organizations are not as rational as individuals, and individuals aren't all that rational themselves.

 

[taniaaust1]

I'm inclined to agree with you. I still get stuck, though, trying to figure out what the CDC actually thought they were going to accomplish with their shenanigans. Delay the paper, yes, but to what end ultimately? Or did they really think they could prevent the publication of a paper by a major researcher?

The way i see it is that CDC is currently still ending up how they wanted things.. we are still (along with XMRV) shrouded in controversy which will put off many researchers from being involved. WPI hasnt got any extra funding etc etc. They are still hoping it all goes away and we still arent clear from it all yet. I still feel no sense of safety from the research till backing papers from others are published and believed. For all we know that paper backing WPI may end up coming out tampered with, thou we are told otherwise.

"a strategic pause"

Cast enough doubt on it.. and who will believe it, things will be the way they always have been even thou studies out showing we have some physical issues going on, we still were be seen as psychriatrict patients. They have got away with it for many years, so why not cant they continue to get away with it... I believe the whole thing was planned.. i believe hey planned to delay Alter and then post their own study. A government agency acting so bias and going to such dirty tricks.. should be being investigated!!! Esp if the one running the CFS section is obviously biased when it comes to the cause of CFS.

 

[citybug]

It's a good time to write to your representatives again, say the study is coming out and many more are needed, and we don't have any research money for XMRV. We need funds for research and the CDC isn't doing it.

Congressionally mandated funds for Neuroimmune diseases and XMRV would be the fastest route to funding.

 

[Angela Kennedy]

Try reading the posts, Angela. Levi made it "an issue about trusting Levi".
Levi said,


He stated his opinon as fact, "There will be no study...." Then he said, "Trust me on this.". I simply asked why I should trust him. I see no reason to trust people just because they say, "Trust me on this." I asked if he has new information. That's all.

I in no way implied he wasn't allowed to have his opinion. He's more than welcome to his opinion and to express it. You have the same opinion as Levi. Fine. You, however, are not telling me to trust you.

I never asked anyone to trust me, much less told them to. I have always stated my opinion as an opinion based on experience which I try to share when I give my opinion. I don't expect people to believe anything simply because I say so.

Frankly, I do think that people who arrogantly say, "Trust me on this" without providing any support for their declaration of fact are full of &%. And it has nothing to do with their opinion on the subject.

What is it with you sick of CFS and the way you write towards me?

'Try reading the post'?

I did read the post thank you very much. I thought he was using the 'trust me' comment metaphorically (as people do). He didn't mean he literally had inside information - it was, I read, a figure of speech.

Now- I was addressing Levi's 'trust me' comment as well as yours. Sometimes people do say things which look literal- obviously you took it that way- which would be fair enough- but can sound as if they do have 'insider info' or something, which is irritating and has the power to obfuscate, a massive enough problem in a field of medicine and patient treatement where obfuscation is the order of the day.

Of course if you had said at the beginning what you've just said here it would have been a lot better. It turns out you were being sarcastic judging from this latest post of yours.

That's ok, but I responded with a genuine question, because this 'trust others' is a common theme in this forum against any one who expresses fears that the community are being - well, to use the English vernacular- shafted. Now of course it could be argued that I could always use clearer arguments in my initial post. Yes, difficult as that is. Many of us could, but we're not perfect, so it's unlikely a 100% target on that will ever be reached.

But this is the second time I've had comments from you against me which are just -well- mean.

You have consistently been one of those people poo-pooing those who critique the scientists or the situation here, and some of your comments are ad hominem (attacking or misrepresenting one point of an argument to discredit the whole argument). It's irritating.

So- I don't need you to tell me to 'read the post' thank you very much. I would ask you to try and curb some of your sarcasm and ad hominem because it actually doesn't work as an argument strategy ('Full of &%'? What, cos he said that one thing?) and is annoying and gets people's back up.

 

[Angela Kennedy]

Conjecture is never to be trusted, trust me on this.

Including the 'every little thing's going to be alright' type of conjecture.