Article: XMRV's Big Test Has Begun : Big Fed Study Ramps Up

You can view the page at http://www.forums.aboutmecfs.org/content.php?99-XMRV-s-Big-Test-Has-Begun-Big-Fed-Study-Ramps-Up

 

Here is my concern:

A Solid Foundation - If XMRV can pass the 'blind test'; ie if one of the labs can correctly identify samples with XMRV in then XMRV can proceed on a solid - one would think unimpeachably solid - foundation. These studies appear to be focused on PCR solely but not finding the virus would also presumably end much of the search for it.

PCR is not the test being used by VIPDx. Here is the statement from their website from January 11, 2010:

Effective immediately VIP Dx will offer XMRV testing by virus culture only. Our improved culture method eliminates the need for additional testing and provides the most accurate diagnostic available with greater sensitivity.

Why would the federal study rely on PCR only?

 

I'm surprised these tests are PCR only too.

Are you sure about that? I don't remember reading that anywhere.

Surely if other tests proved more effective, they wouldn't want to exclude them at this point.

Other than that quibble, I'm really excited by this news. I wish they'd got on with something like this immediately after the Science paper, but it sounds like we're going to get a bit more clarity with XMRV now.

 

Thank you Cort. Great news. Exciting like never before.

 

Honestly the WSJ didn't state about PCR. I went too far. I'm going to take that out! Sorry.

However! Is there a bug in the world that can't be found by PCR? I can't imagine there is. The biggest finding in the Science paper was the PCR finding - for whatever reason, that is what the scientific community is focused on with viruses. We have multiple labs throwing what they have at this bug - if it's there then someone has to find it by PCR. Yes, you can miss some positive samples by just using PCR but it appears to be fairly rare (5%?).

Remember that the WPI and the NCI signed off on this and Dr. Mikovits and Dr. Vernon are overseeing it. They all know what's at stake. They wouldn't have signed off on something that didn't fit their requirements regarding blood storage, handling, PCR techniques, patient cohorts, etc. They are all on board with this study. I can only conclude that this is the study we can trust.

 

It still depends on the state of the testing developed, I think. The new Emory study
"XMRV Infection in Patients With Prostate Cancer: Novel Serologic Assay and Correlation With PCR and FISH" says they used an anitbody test (not on CFS). WPI is working on an antibody test but VIP isn't using it yet. Since Dr. Mikovits said VIP would go back and test the negative results with the antibody test, I'm hoping an antibody test will find XMRV when virus levels are low in blood.
Wall St Journal seems to be quoting people from the XMRV Working Group about the test comparison. I don't think we can assume anyone would be signing off on other lab's work. They are testing to see if anyone has a reliable test now.
I think the Science study's biggest thing was finding XMRV in CFS. With pcr they looked at lots of viruses to narrow down what it could be. Then they grew it and did lots of things to confirm.

 

Is this the study being funded by Glaxo Smith Kline?

Is this the study being funded by Glaxo Smith Kline?

Or is it another separate study from what they are going to do? Thanks Cort

 

This is very exciting and suspenseful. Thanks for the good article on it Cort. Soon we will know for sure I think, one way or another.

 

Cort I am not sure re your point about PCR. Since you probably understand the mechanics of it I'll leave of that and mention something I think is relevant. At the Retrovirology Conference didn't the monkeys infected with XMRV have it disappear by the chronic stage? In other words not be detectable by PCR?

PCR isn't foolproof, there are ways it can mess up, if you are looking in the wrong place in the body, wrong primers, not enough replication cycles and so on.

 

Perils of XMRV false negatives: On bloodwork vs tissue biopsy

Yes to Catch and Sunnyslumber

If XMRV disappears from the blood (as was suggested by Sharma's monkey findings) then I assume PCR on the blood will be negative, while PCR on other tissues would be positive... Can a retrovirus become undetectable (by PCR) in the blood but remain detectable by PCR in other tissues?

My understanding is that this can happen with retroviruses as well as "common" viruses. An excellent precis of the problems of relying on blood tests was provided by Dr Dharam Ablashi, Scientific Director of the HHV-6 Foundation here: http://www.hhs.gov/advcomcfs/meetings/presentations/ablashi_1009.pdf

Dr Ablashi on bloodwork vs tissue biopsy
It's just a 2-page letter, and well worth the read. Some excerpts:

"Given the known tropism of retroviruses, XMRV is an entirely plausible candidate to be producing the well‐documented abnormalities of the central and autonomic nervous system, of the immune system, and of energy metabolism...

The CDC has made several assumptions that we believe will prove to be in error:

1. The CDC has assumed that if a pathogen exists, it can be found in the serum, and
2. The CDC assumed that if there is a pathogen, it is only one pathogen, not 8‐12 pathogens that cause variations of the same syndrome.
3. The CDC has assumed that the timing of sample collection is unimportant...

Patient samples from newly diagnosed cases of CFS offer the best chance of finding evidence of an infectious agent. Studies should be organized to examine samples from these patients separately from those who have been ill for decades...

It is imperative that the CDC study biopsy samples from the gut, and brain as well as heart tissues, and that they look at spinal fluid. Most of the studies done by the CDC have been on serum. However, many pathogens cannot be found in the serum because they do not circulate in the peripheral blood after the initial infection...

In summary, we propose that CDC should invest the majority of its research budget into exploring pathogens in CFS, with particular emphasis on examining spinal fluid, brain tissue, cardiac tissues and gut biopsies."
​

Again, the letter itself isn't that long - I have provided excerpts to tempt you to read the whole thang!

Parvo:Retro smile:

 

Excuse me if I appear uninformed, but can you refer me to the Wall Street Journal article you are referring to?

 

Thanks Catch for the article. So, I want to be clear....there is a study being funded by Glaxo Smith Kline and ALSO this one referred to in the Wall Street Journal...is this correct?? Cort, anyone??? The players are different, altho WPI is involved in both. Am I correct? I just want my ducks in order here.

Thanks to anyone who can clarify this for me.:Retro smile:

 

Thanks Catch for the article. So, I want to be clear....there is a study being funded by Glaxo Smith Kline and ALSO this one referred to in the Wall Street Journal...is this correct?? Cort, anyone??? The players are different, altho WPI is involved in both. Am I correct? I just want my ducks in order here.

Thanks to anyone who can clarify this for me.:Retro smile:

This is different to the GSK one. I think the WPI are less directly involved with the GSK one - this one has the WPI doing their own testing on blinded samples.

 

In this Wall St. Journal article there is a study coordinated by the XMRV Working Group (from earlier conference?)
They'll be comparing their results of 6 labs on testing samples, to see if they have an accurate test. The second phase is looking at 350 samples of different types, and later they would see if can be transmitted by blood donors. According to Amy Marcus of the WSJ, iIn the first phase, the labs include CDC, FDA with two different ones, NCI, Whittemore Peterson Institutes lab, and Blood Systems Research Institute.

The article also mentions as more news the new BioBank that Glaxo Smith Kline is using.

Then (not in that article) the HHS Blood XMRV Scientific Research Working Group with some of the same federal groups and Suzanne Vernon has a study on Cort's Study page. They have step 1 compare test, step 2 test 1,200 healthy donors blood samples and 100 CFS patients samples collected by Dr. Judy Mikovits, step 3 do a series of studies.

Then the AABB (American Association of Blood Banks) has a Task Force with the feds and patient representatives (no study so far).

 

Well, it's a tad confusing to me...but the good news is that this is being taken seriously and they are working hard on understanding XMRV and what role it plays in illness.

Thanks Esther and kdp for your response. My support group wants to learn about this, and I want to have my facts straight.

 

Good letter from Dr Ablashi

An excellent precis of the problems of relying on blood tests was provided by Dr Dharam Ablashi, Scientific Director of the HHV-6 Foundation here: http://www.hhs.gov/advcomcfs/meetings/presentations/ablashi_1009.pdf
:

Thanks for the link to Dr Ablashi's letter, Parvo. I'm not sure if I had missed that one or just forgotten it, but I wholeheartedly agree with him. If there was a petition saying "what Dr Ablashi said," I'd sign it.