A Moment of Reflection: Please Read!

[jspotila]

I don't know why everyone seems stuck on blood since it has been shown to be a problematic way of finding the virus and in the animal models was barely found there.

Because the Lombardi paper reported finding XMRV in the blood. Because the Lombardi paper raised concerns about the safety of the blood supply. The only way to verify the safety of the blood supply is by high through-put blood screening. The blinded, multi-site testing to split blood samples suggested in this thread is the method being pursued by the federal XMRV task force.

 

[John Leslie]

I have heard through a very reliable source in the US that the CDC is attempting to report results of a negative study, but that they used a patient cohort from Reeves and bad PCR methods. When will the US government put a stop to the CDC?

 

[acer2000]

I have heard through a very reliable source in the US that the CDC is attempting to report results of a negative study, but that they used a patient cohort from Reeves and bad PCR methods. When will the US government put a stop to the CDC?

Wow, you'd think after all that has been said from the beginning about people not culturing this virus before doing PCR, and the CDC moving Reeves aside they would have at least A) used the exact same methodology as the WPI in their study and B) recruited new patients (or at least re-evaluated) the patients that Reeves had picked out to make sure they met the same criteria as the Science paper.

I hope this isn't true, or if it is, I hope they get scrutinized to the point where they re-do their work to make it a valid replication.... using all 4 methods outlined in Science, and the new antibody test as well.

But seriously though, this is getting ridiculous already.... CAN SOMEONE JUST DO A FRICKIN' STUDY THAT ACTUALLY REPLICATES THE METHODOLOGY ORIGINALLY USED TO FIND THIS VIRUS IN CFS? IS THAT TOO MUCH TO ASK? What is the point of publishing a paper on this if you aren't going to try to replicate the methodology? Isn't that the whole point of "replication"?

Barring that, can someone take a cue from the Emory study and look for it in the GI track, lungs, or lymph nodes of CFS patients? Its not like CFS patients don't have swollen nodes, and GI symptoms... it would be pretty easy to justify doing such a study.

If contamination with such viruses is so common that all three of the Science paper labs were contaminated simultaneously (WPI, NCI, CC - despite not sharing samples), then it stands a very good chance that at least one of the replicating labs would be also contaminated. But supposedly this isn't the case? Hmmmm right....

Maybe if one of the labs that produced the negative studies is soooo sure they aren't contaminated they can bring Mikovitz or Ruscetti to their lab and have them replicate their original methodology in their "non-contaminated" lab on fresh blood.

And then what about Dr. Hubers study? Reportedly she got not one positive using her PCR, but then she re-ran it using the WPI 4 step test and got many positives? How does that get explained?

Also, IIRC there have been a decent number of papers that haven't found this virus in prostate cancer either, but nobody is questioning the validity of that finding... in fact the line seems to be "well we know its associated with prostate cancer, this much is true, but CFS... ehhhh".

Sorry for the rant, but this is seriously annoying.

 

[alex3619]

Hi Mark

This sort of investigative pilot study would be very cost effective, and quickly provide a whole lot of evidence. This could then be used to support a grant application for a small study, and the results of a small study will support a grant for a large scale study (presuming they get data that supports an XMRV infection).

So far as I am aware, the trust issue is dealt with through a reputable third party that controls the IDs for samples. Nobody outside this agency knows who the real patients are and who are controls, not even the submitting doctors. If someone from the biopsychosocial theorists sends in false samples, they will be revealed when the results are decoded - I doubt anyone would risk it, but then I doubt many of these people would participate anyway.

Bye
Alex

ME/CFS doctors, governments and researchers around the world could send samples of their patients to the WPI to be tested. I know some in the US have done this, but there's a very simple way to test whether the WPI's methods are accurate. A bunch of agencies around the world send coded blood samples to the WPI. Each agency codes an equal number of samples from their ME patients and from healthy controls. Those codes are all stored in some secure system such that WPI has no way of knowing which samples are which. WPI tests the samples for XMRV and releases those results. The codes are then revealed, and the results become clear.

 

[Mithriel]

The studies have been done on blood because the labs had stored blood samples available, this meant it was a cheap option. Permission had already been given for the blood to be used so they did not have to recontact the patients and ethical approval was got easily.

They then used the procedures that were already in place in the lab for PCR work so that was a cheap option too; no new equipment needed, no training of staff.

The procedures were probably what was in place for finding HIV.

The WPI work was done in three separate labs including ones which have done cancer research for years, so that should have been enough validation for a government agency to do a large scale replication firstly making sure their technique could find XMRV then using fresh blood from many well characterised patients. They should have separated them into CCC CFS, Fukuda CFS and empirical definition as well as, maybe, idiopathic fatigue.

To deny that there are problems with cohorts is not useful to anyone. We are being left in limbo. No one denies the virus exists, no one can deny that some patients with CFS have it. It is time for some decent research.

Diagnostically, blood is not used very often in PCR and for soem bugs they are desperatley trying to get PCR to work but they are getting nowhere. XMRV is not unusal in that respect

Mithriel