Blood from a Stone: CAA Dr. Suzanne Vernon's Analysis of CDC Paper

gracenote

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Dr. Vernon's real point in my opinion is that there

NEEDS TO BE A TRUE REPLICATION STUDY
I think that's what so many of us here have been saying all along . . .

. . . at least since that first non-replication study, and then after that second non-replication study, and then again after that third non-replication study . . .

So the explanation for not finding XMRV in these samples is simple this was a study designed to not detect XMRV . . .
This is what we have been waiting to hear about all these non-replication studies. Finally! Welcome to the world of not finding what you're not looking for!

Now can we finally put some real pressure on our very own government agencies to do right by us? Where's that FDA/NIH paper?
 

Daffodil

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isnt glaxo smith kline doing a replication study? or was it stanford? sorry my memory...
 

Sing

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It seems as though the story with ME/CFS and the medical field has been inappropriate testing. How many times have you been tested inappropriately and then told there is nothing wrong? Then, just because they run some tests, it looks as though they are responding and doing their job. The loser is not only the patient, it is whoever is paying the bills. We need appropriate testing and so do research projects. We need scientists and doctors who have comprehended the whole illness, who have a very good general idea, like most of us do, before they get down to working on the details. (I have restrained myself from screaming.)

Thank you very much Dr. Vernon! We need to keep being assertive until this thinking starts to change!

Onward!
 

taniaaust1

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This confirmed my thoughts. CDC never wanted to find the Virus.

Thank you Suzanne Vernon for saying things how they actually are.
............

I think we all need to push the CDC to do another study.. this time a TRUE REPLICA study using EXACTLY same methods as original study rather than allowing them to get away with such bull crap as this.

If allowed to continue on in this way.. the CDC will never give out a study which represents most of those with CFS. Are we going to allow them to say time and time again that others study results are due to a subgroup of CFS and not representive of the CFS community!!

I think it's time for protests to start to happen. If they are going to play that card, they need to start defining the subgroups and using the right subgroups. Maybe groups do lay ins outside of the CDC office to gain public attention of what is going on.
 

justinreilly

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This confirmed my thoughts. CDC never wanted to find the Virus.

Thank you Suzanne Vernon for saying things how they actually are.
............

I think we all need to push the CDC to do another study.. this time a TRUE REPLICA study using EXACTLY same methods as original study rather than allowing them to get away with such bull crap as this.
Yes, Thank You Dr. Vernon!!

CDC can never be trusted to do a good faith accurate study: it is against their 'penal interest' as we say in the law. ie Reeves and Heneine do not want to go to jail so they can not start telling the truth at this late date! Instead, NIH must fund proper extramural studies!

I think it's time for protests to start to happen. If they are going to play that card, they need to start defining the subgroups and using the right subgroups. Maybe groups do lay ins outside of the CDC office to gain public attention of what is going on.
I totally agree!
 

justinreilly

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From Dr. Vernon's piece:
If the rate of XMRV in the healthy blood supply is 0.1% (or 1 person out of 1000), then there is a slim chance of detecting XMRV DNA among 41 healthy blood donor samples. So, no surprise there.
I'm perplexed as to why she assumes the rate of infectivity of XMRV in the blood supply is 0.1% It has been generally established as 2.2 - 7% of normals. Am I missing something?
 
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From Dr. Vernon's piece:


I'm perplexed as to why she assumes the rate of infectivity of XMRV in the blood supply is 0.1% It has been generally established as 2.2 - 7% of normals. Am I missing something?
My question too.

I want to say, when Vernon criticized the WPI study, I got the sense that she was calling it as she saw it. I didn't know if I agreed with her conclusions. But I felt she was being objective and looking at it with a critical eye. And.... has anyone found factual errors in her comments? maybe so.

But, I appreciate her comments here. I am surprised at her strong words at saying they didn't want to find it. I don't know if it is the best strategy here. But it sure makes for a good news soundbite.

She may know how very obvious the tube problem is so that a scientist that does this is either still a student or intentially skewing it.

But, I will also say that one researcher (with CFS) recently said that everyone uses their own methods. Even if they say they use the same methods, something is usually different. It's like a woman in the kitchen. Each woman has her own methods and she does it her way because it works for her, she finds it successful. Even how to scramble an egg. So, when told to do a certain method, the scientist relies as much on his own experience on how to find viruses as he does instructions. It's like trying to give a man directions. Was the lead author in this study a man?

Sorry. I know gender has nothing to do with this (well, I assume). What that researcher said ( I don't remember which one) he was saying about all researchers.

Tina
 

George

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From Dr. Vernon's piece:


I'm perplexed as to why she assumes the rate of infectivity of XMRV in the blood supply is 0.1% It has been generally established as 2.2 - 7% of normals. Am I missing something?
The 0.1% is from the Abott labratory study presented at the CROI along with the monkey study's. That's the amount they found in some 2000 blood bank blood samples. Hence the long wait for CFS patients to be banned in the US.
 

shiso

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I think the CDC paper was blatantly flawed on its face in so many ways, e.g., with its suggestion that Canadian Criteria patients may have some other disease, and at the same time so glibly confident in the tone with which the conclusions were presented, that it ironically made itself an easy target for attack. But it was great that Dr. Vernon executed and delivered such a an unequivocal criticism of the study, and so swiftly too. Thank you Dr. Vernon!

As for the general population prevalence rate, I doubt anyone can say with certainty what that rate is at this point. I'm OK for now with the takeaway point voiced by Dr. Vernon that, with a study sample and study design conceived by Reeves-era CDC in this particular CDC paper, it was no surprise they found no virus.
 

parvofighter

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BRAVO Dr Vernon

Shiso, my sentiments exactly:
I think the CDC paper was blatantly flawed on its face in so many ways, e.g., with its suggestion that Canadian Criteria patients may have some other disease, and at the same time so glibly confident in the tone with which the conclusions were presented, that it ironically made itself an easy target for attack. But it was great that Dr. Vernon executed and delivered such a an unequivocal criticism of the study, and so swiftly too. Thank you Dr. Vernon!
Keep it up, Dr Vernon!
Please keep it up Dr Vernon. And when I say "keep it up", I mean, continue to apply your analytical skills in a judicious fashion that examines all sides of the XMRV research.

Were Dr V's words too strong? NO!
I have to disagree with an earlier poster who felt Dr Vernon's comment "designed not to detect XMRV" was too strong. Dr V simply called it like it is. No ethical scientist, who values scientific rigor should be "cautious" in their critique of seriously flawed XMRV studies for political reasons. That's an excellent way to discredit one's scientific integrity. All we want is the truth, and tip-toeing around lousy science will not assist that process. If cr@ppy studies with fraudulent cohort definitions and pathetic lab methods are allowed to escape critique unscathed, that will be a sorry day for science... as indeed it has been for so long.

Does it matter how strongly CAA advocates for ME/CFS?
Another comment was made that if XMRV doesn't work out for us, then we don't want advocates contaminated by it, and it doesn't matter how "strident" the CAA is in their critique of bad science. First of all, "strident" is off-base. Dr V simply called it like it is.

We need all the help we can get to cultivate a desperately needed Sense of Urgency...
I find it fascinating, AND encouraging that Dr V has begun to do exactly what patients have been clamoring for ages: apply rigorous scientific scrutiny to all sides of the XMRV equation. We need all the help we can get - whether from newcomers or early adopters of the XMRV science. And I vigorously contest that slothful or disinterested disregard of bad science doesn't harm seriously ill ME/CFS patients and their loved ones. For the minority on this forum who don't yet comprehend how serious this illness is, please see the thread on Sense of Urgency (http://www.forums.aboutmecfs.org/sh...ld-a-SENSE-OF-URGENCY&highlight=sense+urgency )... and please educate yourself on the myriad and serious health consequences of CCC ME/CFS. This may not be everyone's reality on this forum, but to dismiss the dire consequences of time on progressing ME/CFS is completely missing the boat.

Good science REQUIRES an open, inquisitive mind
I'm reminded of the words of one eminent XMRV researcher who stated something to the effect: "I reserve the right to change anything I say about XMRV, in a year". Thinking scientists - particularly those that are not pathologically narcissistic, nor driven by financial gain - recognize that new data can always surface that changes their perspective on a given issue. It's GOOD that they remain open to new and more compelling findings. That's how science progresses. In fits and starts. Messy. But iterative.

Thanks Dr V
Thanks again Dr V. for a necessarily hard-hitting expose of XMRV shenanigans. It's about time... and keep it up! Consider ALL XMRV research intelligently and critically - particularly the studies which embody down-right laughably horrendous science.

Parvo
 

CBS

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...I don't understand the 0.1% figure either in regards to presence of XMRV in healthy controls.
My read on the 0.1% figure is that it originally came from the Abbott study presented at the 2010 CROI conference (http://retroconference.org/2010/Abstracts/39393.htm). R. Silverman was a co-author. As to why Dr. Vernon used that figure (as opposed to the 3% found by the WPI and friends) is a guess but I suspect that it may have been because that was a prevalence arrived at by independent researchers using methods similar to those employed by the CDC (assuming blood was collected in the correct tubes). As such, that is what you would have expected to find in this cohort with these methods (sans culture or looking in other tissues - anyone game for looking in the respiratory tract?). It's a pretty conservative way to approach this. Someone (Jenny?) from the CAA may have an explanation from a more direct source.

According to Cort's interview with Dr. Vernon (http://aboutmecfs.org/Int/IntVernon07.aspx), it looks like she came over from the CDC on approx. Nov. 11, 2007.

It appears that she was at the CDC when subjects were identified (2002 & 2003) but had left before the blood samples were collected (2008 & 2009).
 
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I don't want CDC touching anything having to do with CFS. They just need to step out of the way and let careful researchers take the glory.

Fool me once, shame on you. Fool me twice, then I don't want to have anything to do with you.

Tina
 

justinreilly

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Vernon and CAA Have to Keep Fighting! No excuses!

Now Vernon still has to come out strongly against the Reeves criteria of which she was an author. This is crucial now. The are firing everything the can at us. We need CAA to really let them have it (the truth) now. Jenny Spotila said at one point on the CAA thread something to the effect of "what're we supposed to do, try to interest the media which is totally uninterested in us?" Well now interest is brewing and will let loose once the FDA study comes out. CAA has to take advantage of this and totally expose our oppressors! Absolutely no excuses now!
 
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Now Vernon still has to come out strongly against the Reeves criteria of which she was an author. This is crucial now. The are firing everything the can at us. We need CAA to really let them have it (the truth) now. Jenny Spotila said at one point on the CAA thread something to the effect of "what're we supposed to do, try to interest the media which is totally uninterested in us?" Well now interest is brewing and will let loose once the FDA study comes out. CAA has to take advantage of this and totally expose our oppressors! Absolutely no excuses now!
yes, yes, yes, You are supposed to get the media interested in your message. Do something different or shocking. News media likes that sort of thing.

Tina
 

natasa778

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"designed not to detect XMRV"

This is too strong imo.
I could not disagree more. Take what Vernon said on blood collection methods CDC used and combine that with the fact that CDC ignored positive samples sent to them (re WPI press release).

Then on top of that sprinkle the fact that one of the CDC virologists in this study was heading their 1994 study that 'disproved' any viral links in CFS. Then finish off with the fact that the other CDC virologist in the study was awarded in the past for using very specific methods to find a very specific similar viral product, and that those learnings were deliberately ignored in this study.

Designed not to detect XMRV? You bet!!
 

garcia

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I wrote this comment on the CAA facebook wall (under their "blood from a stone" announcement). Hoping they will respond:

The 1 in 1000 is almost certainly a vast underestimate. If XMRV were that rare it would be of little importance and could not be the cause of CFS.

I understand the argument you are trying to make (that the zero positives in controls doesn't matter), but that argument doesn't help us.

A better argument is that if XMRV is between 3% and 10% in the general population, then given the CDC found it in zero controls statistically means that their test is almost certainly incapable of detecting XMRV.

This also ties in with the fact that the CDC received 22 XMRV positive controls (from the NIH & elsewhere) and failed to detect XMRV in a single one of those controls. They obfuscate this fact in their paper by using the weasel-phrase "Bona fide" [controls]. This is bordering on academic fraud.

Our patient advocate organizations need to call the CDC out on this one.
 
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Let's just say that the prevalence of XMRV is about 4% (which I personally believe to be true) but the prevalence in the blood supply is only .1, as Dr. Vernon states. Dear forum scientists, is there a way both of these "facts" could be accurate?

When HIV was unchecked, hemophiliacs were tragically contracting AIDS through their frequent transfusions. (Remember Ryan White?) But when I Google "hemophilia" and "Chronic Fatigue Syndrome" or "hemophilia" and "prostate cancer," nothing jumps off the page.

Thoughts?