3 New XMRV Papers!

[SilverbladeTE]

as I keep saying...wait till the fat lady sings, another 2 or 3 years at least
such research/organisms are at the edge of our knowledge/ability
we are not omniscient gods, FFS!!
*aimed at the arrogant twerps out there, not folk on this board*

And as I keep saying, there's VAST interest in keeping such things, if true (and we don't know yet), absolutely covered up.
Implications are massive, and yes that damn well does have an effect on the research, be it funding or "If this gets out, it will ruin vaccinations, they'll ban it! for the sake of the children you must keep this quiet!" etc
(and again that's not necessarily about the researchers, but funding committees etc, there's HUGE amount of political/financial bias in research via the use of influence and finances)

 

[Bob]

Daffodil, could you please elaborate a bit.

I understand it if you can't reveal any sources, but could you at least tell us if this source is an established researcher or some pseudoscience quack a la Gerwyn/Ronald Roberts/V99. Without revealing any sources, I believe it's important to know from which direction this is coming.

Lipkin hasn't carried out any XMRV research yet. (Am I wrong about this?)
Nothing that Daffodil said makes any sense whatsoever, based on what we already know.
Except that DERSE detects only XMRV. But that's just a scientific fact. It's not news.
And Daffodil can't share her sources. (What a surprise!)
So I think we should just consider it ill-informed gossip.

 

[FancyMyBlood]

Lipkin hasn't carried out any XMRV research yet. (Am I wrong about this?)
Nothing that Daffodil said makes any sense whatsoever, based on what we already know.
Except that DERSE detects only XMRV. But that's just a scientific fact. It's not news.
And Daffodil can't share her sources. What a surprise.
So I think we can work out that there aren't any real sources, can't we?

Maybe Lipkin already started the deep sequencing. It's a CFI project and while they stated they would not look at XMRV, I *believe* XMRV would turn up anyhow (if it's a genuine human pathogen). But I don't know the timeline of this study, although I *remember* something about rounding it up late 2012. Or maybe that was the multilab XMRV study where Lipkin has oversight on. It's a little confusing.

Wether daffodil has any real sources or not is difficult to tell. While I understand he/she can't reveal them I don't understand why he/she is so mysterious about elaborating on them.....

 

[Bob]

Maybe Lipkin already started the deep sequencing. It's a CFI project and while they stated they would not look at XMRV, I *believe* XMRV would turn up anyhow (if it's a genuine human pathogen). But I don't know the timeline of this study, although I *remember* something about rounding it up late 2012. Or maybe that was the multilab XMRV study where Lipkin has oversight on. It's a little confusing.

Yes, it is confusing isn't it, because we haven't been given much info about all the various projects.
I agree with you that XMRV would turn up in the CFI project, if it is present, but I didn't think that project had actually started yet. (No one seems to know anything about it.)
And Lipkin wouldn't be looking specifically for XMRV anti-bodies, so he wouldn't make an announcement about that.

The multi-lab XMRV study, that Lipkin is overseeing, is supposed to have now finished its 'initial round of testing'. (No one knows why there might be further rounds of testing.) Were they looking for antibodies? - I hadn't heard that before. There was talk that Lipkin would allow Mikovits and others access to his deep sequencing technology, so Daffodil could potentially be making a reference to that. If they have now unblinded their samples, then there might now be results.

Wether daffodil has any real sources or not is difficult to tell. While I understand he/she can't reveal them I don't understand why he/she is so mysterious about elaborating on them.....

Well if she can't elaborate, then she shouldn't have posted anything. It was provocative, and unhelpful. Daffodil must have known it was provocative, and that it would stir up interest. But then, immediately afterwards, she said things along the lines of: "oh I shouldn't have said anything; my bad; I can't reveal my sources; etc." Probably enjoying our reactions.

 

[Daffodil]

i wouldnt post just to be provocative. i cannot elaborate because i dont know the science. i just typed what i was told. i am pretty sure that if lipkin found something, it would have been leaked to my source.

 

[FancyMyBlood]

i wouldnt post just to be provocative. i cannot elaborate because i dont know the science. i just typed what i was told. i am pretty sure that if lipkin found something, it would have been leaked to my source.

Could you at least tell us what kind of individual is your source?

Is it an actual scientist involved in this project (or someone close to it) or is it just one of the usual 'XMRV conspiracy' suspects? I believe this information is crucial to establish any credibility.

If you won't elaborate further on this, I agree with Bob and you shouldn't have said anything in the first place. Maybe you misintepreted the impact of your statements, but people are desperately waiting for any new information regarding Lipkin's studies. Just throwing around statements like that without elaborating on them is not a good idea imo.

 

[Daffodil]

yes its a scientist ..he is not directly involved, i dont think.

i can rarely keep my mouth shut about these things. sorry. i just know there is no xmrv being found.

 

[SOC]

yes its a scientist ..he is not directly involved, i dont think.

i can rarely keep my mouth shut about these things. sorry. i just know there is no xmrv being found.

I think the point we're all trying to make is that what you think you know and what you actually know may be (and probably are) two different things.

None of us knows what's going on with Lipkin's research. Information leaks are rarely sufficiently detailed, especially in situations with as much scientific complexity as this, to give absolute understanding. A scientist not directly involved in the research is not a good source of information about that research.

I implore people to avoid claiming absolute knowledge about research that is important to all of us when they don't have the ability to back it up with verifiable facts. "I have heard that..." is one thing. "I know that..." is another.

 

[Bob]

i wouldnt post just to be provocative. i cannot elaborate because i dont know the science. i just typed what i was told. i am pretty sure that if lipkin found something, it would have been leaked to my source.

yes its a scientist ..he is not directly involved, i dont think.

i can rarely keep my mouth shut about these things. sorry. i just know there is no xmrv being found.

So, you say that you shouldn't have said anything, but you made the effort to type it all out and post it anyway?
You stated that the anti-body results were meaningless, but then you said you don't understand the science. (Not very helpful or considerate for people who are worrying about their antibody test results.)
Then you said that Lipkin hasn't found XMRV because you are 'pretty sure' that if Lipkin had found anything, then it would have been leaked to your 'scientist friend', who isn't actually involved in any of Lipkin's studies. (But Lipkin isn't actually doing any XMRV research anyway.)
And you just 'typed what you were told', even though none of it makes any sense.

So, we're not really any the wiser, are we?

 

[Bob]

I think the point we're all trying to make is that what you think you know and what you actually know may be (and probably are) two different things.

None of us knows what's going on with Lipkin's research. Information leaks are rarely sufficiently detailed, especially in situations with as much scientific complexity as this, to give absolute understanding. A scientist not directly involved in the research is not a good source of information about that research.

I implore people to avoid claiming absolute knowledge about research that is important to all of us when they don't have the ability to back it up with verifiable facts. "I have heard that..." is one thing. "I know that..." is another.

I agree SOC. Thank you for explaining it so patiently!

 

[VillageLife]

I don't think anything has been simple with ME/CFS or XMRV or any of this whole thing from the start.

what ever the Lipkin results are, i dont see them as being black and white, this is very complicated and it's going to take some time to work out.

 

[jspotila]

The multi-lab XMRV study, that Lipkin is overseeing, is supposed to have now finished its 'initial round of testing'. (No one knows why there might be further rounds of testing.)

My recollection of the plan was to unblind the results, and then if there was any discordance on any result - e.g. Sample A tests + in one lab and - in another - that further testing would be undertaken to sort out the discordant result. Am I misremembering the plan?

 

[Daffodil]

LOOK. i heard lipkin is finding the same old chit. EBV CMV HHV6 etc. nothing new and earth shattering. thats what i heard a month ago. if you dont like what i type, then fking IGNORE IT.

 

[SOC]

LOOK. i heard lipkin is finding the same old chit. EBV CMV HHV6 etc. nothing new and earth shattering. thats what i heard a month ago. if you dont like what i type, then fking IGNORE IT.

Thank you. That is much clearer.

 

[Daffodil]

LOL

sorry today is a very bad day for me. i shouldnt have lost my temper

 

[barbc56]

Daffodil, I think we can a

LOL

sorry today is a very bad day for me. i shouldnt have lost my temper

Daffodil, I think we have all done this at one time or another especially when not feeling well. But it takes a mature person to actually apologize and move on. Kudos!!!

Barb C. :>)

 

[Bob]

LOOK. i heard lipkin is finding the same old chit. EBV CMV HHV6 etc. nothing new and earth shattering. thats what i heard a month ago.

Well, a month ago, Lipkin had not even unblinded the samples in the XMRV study. They only finished the first round of testing on 30th June. And, as far as anybody knows, Lipkin has not started the CFI research yet. So that confirms that it's just pure speculation and nonsense.

If Lipkin had been finding EBV, CMV & HHV6 etc., then that could indeed be incredibly 'earth shattering', depending on what exactly the results are. It could be earth shattering for all sorts of unexpected reasons.

if you dont like what i type, then fking IGNORE IT.

Daffodil, I'm not going to 'ignore what you type', as you are promoting utter nonsense as 'fact', with no evidence to back it up. It's irritating, annoying, time-wasting and disrespectful. Especially for a subject that people are following very closely because it is important.

But even worse than that, you have stated, as a fact, that all the forum members' XMRV antibody test results are invalid. And it turns out that this was based on no evidence whatsoever. This is unhelpful, misleading, dangerous, inconsiderate, and thoughtless.

 

[Bob]

My recollection of the plan was to unblind the results, and then if there was any discordance on any result - e.g. Sample A tests + in one lab and - in another - that further testing would be undertaken to sort out the discordant result. Am I misremembering the plan?

The last I heard (Lipkin's description of the study), was that if any of the researchers had positive results, then that would count as a positive study, no matter what the other researchers found. There wasn't any suggestion that they would try to sort out discordant results. Things might have changed since I read that, but Lipkin was clear at the time that only one researcher needed positive results.

 

[currer]

Hi all, can we remember that "xmrv" is something of a red herring?

Mikovits has already retracted the section of the science paper that was contaminated with the plasmid xmrv.
The MRV retrovirus that Mikovits found in her samples is not XMRV and has never been completely sequenced.

All these papers denying over and over again that xmrv is a human retrovirus.
The question is not whether "xmrv" is there............
But we need to go further...what is the significance of the MRV sequences found in patients, and the reason for the antibodies to MRV type proteins?
If it is not "xmrv" we still need to know whether there is a murine retrovirus playing a part in this disease. Focusing on a narrowly defined sequence whilst ignoring the wider implications of the research is not good science.

 

[Bob]

sorry today is a very bad day for me. i shouldnt have lost my temper

FYI, it is possible to edit or delete our old posts.
Sorry you are having a bad a day. I'm not having a great day either today, which is why I've been spending too much time on this thread.
We all have bad days sometimes, but we don't all start telling people that their test results are invalid.