Maldarelli XMRV Study Underway

I admit I don't understand all the science. This is at the end of the Supplemental Sciences section - First they show that three CFS XMRV strains were very similar to the reference strain (VP62). They also show where the strains differ - which, would I think be important.

Maybe all the other strains after that were different - they were unlucky with those first strains..

This next part is difficult but it appears to me to state that they could detect the VP 62 clone in their XMRV infected samples. They used lysates prepared using Raj(VP62), the LnCap cells they were using and another. If you'll look on the figure you'll see that XMRV shows up in all three of them..in fact in B it shows up better in the VP62 line than the LNCap line which could mean, I suppose, that VP62 does not show up well when you are using LNCap to grow the cells at least in some cases.

I don't know what all this means - and I grant that the VP62 clone is not the best - but it was in there, in some fashion, in the first study...Maybe you explain more about this.

I didn't casually slip in anything. Dr. Miller said in a comment to Gerwyn's blog that was posted on the ME/CFS Forums that he would do that.

http://niceguidelines.blogspot.com/2011/01/must-read-if-you-are-xmrv-positive.html

You are so suspicious... I'm not trying to distort anything or subtly get anything over on anyone..
No one was out to get XMRV or the WPI. The intent was to find XMRV...why would we not want to find XMRV? What would anyone with CFS get out of that? What would our motive or Dusty Miller's motive be in doing that? We would love to find it. Can you imagine how happy people would be if a gamma retroviriologist of Dusty Miller's ilk said "yes, XMRV is there." Do you know how much that would mean for everyone???

But what about this asleep?

The CAA collaborated with GSK to use a cohort that looked very like the original WPI cohort. I don't know what the methods were but I think we can agree that it's in the best interests of a major producer of antiretroviral drugs to prove that XMRV is present in CFS? If we can agree on that then maybe we can agree that they are going to use the techniques they think can best find it....I assume that that includes those techniques in the original study.....Maybe Jennie knows more particular.

I will grant that the CAA has not given the WPI money and maybe they should have. Can you grant, though, that they are helping produce a study that is trying to find XMRV?

Cort, they could start by donating $180,000 to the WPI instead of donating the same amount annually to Kim McCleary's personal bank account. Right now $180,000 would go a heck of a long way at the WPI. I only wish I had that money to give them myself.

I am not a virologist either, but I'm pretty sure that the reference you provide here is to serology methods, not stand-alone PCR as you originally implied. So your original quote is still unsubstantiated.

I don't know why you are talking about Miller here. The context of your original quote about using WPI methods was clearly referring to Maldarelli:

As such, it is still completely unjustifiable and an insidious undermining of fact.

But even if I grant that you were talking about Miller (which you weren't), let's take another look at the quote you supply from Miller:

The phrase "many of the same techniques" is spectacularly vague. If his common techniques include "some use of" PCR and WB, then he will likely not find XMRV. Methodology encompasses far more than just "techniques." Moreover, the abundance of failed attempts to find XMRV using the same tired methods makes it clear that we need scientists who will use all of the Lombardi methods down to the most seemingly insignificant detail.

This is not a negotiation of truth. There is no "granting" that the CAA hasn't funded the WPI. They haven't, end of story.

As for the GSK study, it's hard to find much information (perhaps because the CAA announced it using their famous Inside Voices?). Here is your description from your ongoing studies page

Firstly, what evidence is there that this is a true replication study? In other words, what reason is there to believe this study is not using methods that have pre-programmed it for failure? (Hint: the answer is not a generic claim that everyone wants to find XMRV)

Secondly, this study contains the same political dynamite that sparked this whole debate: the use of XMRV+ samples. This is becoming something of a theme for the CAA...they really want those XRMV+ samples retested. Given the potential danger this poses, this theme reflects very poorly on them.

From the Association's FAQ - http://cfids.org/cfidslink/2010/010607.asp#2r "Like most grantmaking organizations, our research policies preclude us from disclosing details about studies that were not approved for funding. This preserves the applicants ability to submit the study to another institution or to revise and resubmit on another round. It is possible to state that at the time of the Associations most recent Request for Applications (March 2008) there were no applications on the topic of XMRV and CFS." I can't say anything more than that.

Also from the FAQ "The Association is also collaborating with several groups studying XMRV and attempting replication studies. These collaborations have taken various forms, from providing consultation on CFS (since many of the researchers engaged in these studies are new to CFS research), to linking bench researchers with sources of clinical samples."

I can't comment on the specifics of the GSK study because of confidentiality agreements. However, the Association requires BioBank collaborators to publish their data, regardless of the results. I do not have a timeline, but the GSK study will be published.

Gerwyn posted this at ME/CFS Forums. Judy Mikovits wanted it to be known about the Malderalli study:

Quote

"She informed me that neither the WPI or the others mentioned [Drs Ruscetti and Lo/Atler] are involved in any way.

She also informed me that the retesting of XMRV positive people is set to take place in John Coffin' s laboratory and that Dr. Malderalli works for John Coffin.

She asked me to make the contents of our communication known and she is willing to answer individual e-mails from people who are still in doubt about the above."

Very interesting, thank you. We should not let go until we know the reason for what has happened. Time for people to show where they stand and what their motives are.

Paranoia, half truths and misinformation

....Paranoia is a thought process heavily influenced by anxiety or fear, often to the point of irrationality and delusion. Paranoid thinking typically includes persecutory beliefs concerning a perceived threat towards oneself.

There is so much, pardon my French, crap, floating around on patient forums it is frightening.

How to sort it out - post only original material from original sources - stop trying to read scientists minds unless you can provide official scientific evidence of having ESP personally - stop rumors by refusing to repeat them.

These people are scientists not people with a gun on a grassy knoll - patients need to get a grip.

Yes, and you are adding to it. Please specifically state the basis for your alleged conspiracy theories.

We do have a grip, Kelly. Are you qualified to diagnose paranoia?

That's why we are dissecting and discussing all of the information that we can find. I've been through the political hell of this for around 27 years and I've seen very little paranoid behaviour from patients. I have seen very savvy judgements and warnings.

If you are so sure of this paranoia diagnosis why not furnish some proof?

I am not into conspiracy theories and have always tried to avoid them. Also at this moment, i am not making any theories. But do you think it's normal to look for patients for a study and tell them about a number of labs that are involved and then to hear from those labs that they are not involved at all?
I realize that most of the knowledge presented here is second hand, so i don't say i know the truth, but in such a situation i want to know what the truth is. I don't speculate, i just say there is a blank spot and i'd like to know what's there.
Or can you make sense of this? Or don't you think this matters at all?

That's absolutely true... unfortunately it's almost imossible to get everything firsthand. Just imagine how many emails Judy Mikovits would have to write for example. I realize this is a problem.

It would be better if anyone, regardless of the source of the information or topic, requested permission from the source and then posted the actual full email instead of just paraphrasing it. A screenshot would be ideal. That way everyone could judge for themselves and we'd have less room for mis-interpretation.

I'm not sure if I was being accused of paranoia there, but no matter.

FWIW, before posting that I confirmed the facts with someone who I trust that is also in communication with Judy Mikovits. I didn't want to bother her because she's got more important things to do than answer a bunch of e-mails from patients.

But what if the ignorance hurts your chance of reaching the goal? I'm not saying it is like that, but if we are ignorant we can't know. Of course we have to live with some uncertainty...

But seriously now. If you were the boss of an organisation and someone working for you tries to find participants for a study and tells them that other labs from your organisation plus yet others will participate and that is not true, would you not care?
I don't think this is a bagatelle, no matter why it happened. So someone should find out what happened.

Cort, "Who shall remain nameless"? I read what you posted over there; so did others. I thought maybe that was why you got banned, or maybe because you registered under MEman last June 31.

I've been reviewing this thread and I think Asleep made some very good points about how damaging a flawed study can be. This is very serious stuff and I don't think amateurs should get involved.