Cooperative Diagnostics PCR Test Poll For an ACTIVE Infection

[hensue]

I have already been tested

I should send my blood into this company. Just to see what they would come up with.
What do you think?

 

[dmarie4301]

Do you like to throw money down the toilet?

Well, I would like to know if they are getting any positives.

A friend shared this with me:

"The CD test was based on XMRV taken from prostate samples. Dr. Peterson himself said that we had a different strain of XMRV. I'm not sure if this test would have picked up those differences."

Are they looking for a different virus, perhaps? That's why no positives? That's why they claim no false positives, cuz they dont get any positives?

I shouldve listened to WPI. I dont think this lab knows what they are doing. I know one other person who tested negative with them, not on this site, and one more sent his/her test in today. 5 out of 5 isnt very good odds, especially when we are marking moderate to severe Cfids.

Just my opinion. Buy yourself something else with the $400. Or save it for a rainy day.

Take care,

Donna

P.S. You went with VIP, right? Have they come up with anything conclusive on your results yet? Still, lots of negatives with them. But at least some positives.

 

[hensue]

I was positive on both of the test. PCR and Culture

I was trying to be funny. I did not think that was a good Company. I know you tested negative. I think all that are testing negative and positive.
It is too early to tell. It will not be long I think that we will have an fda approved test.
Take Care

 

[fresh_eyes]

I should send my blood into this company. Just to see what they would come up with.
What do you think?

That could be a very interesting test, hensue! If you were willing & could afford it, we could *really* learn something.

 

[hensue]

Thought you would like that...

It really would be interesting but do I really want to thow away 400.00 jacks?

 

[fresh_eyes]

It really would be interesting but do I really want to thow away 400.00 jacks?

Well, no, of course not, but...kinda!
Shall we pass the hat for the "Send Hensue's Blood to a Sketchy Lab" Fund?

 

[dmarie4301]

Sorry Hensue

I mean about not getting your humor.

So you are positive???? With VIP??? And you had Lombardi do your test too, huh??

I would be so excited to get positive. Just to know why my body is so screwy.

 

[starryeyes]

Sorry you tested negative Donna. What an odd dilemma to not even know if that's correct. It would be great if someone positive on both tests like Hensue could send their blood to CD. Maybe there's somebody out there who will do it.

 

[Rrrr]

CD test results

i got my cd test results today: negative.

and i have what i think of as classic cfs, and have had it for 20 yrs.

we'll see how all this shakes out later, when the testing becomes more accurate.

- rrrr

 

[dmarie4301]

No positives

So, we have 8 negatives now with CD. I know two others not on this board, who were negative too, 10 out of 10.

Do not go to this lab!!! Dumb me. I blew $400. Oh well....

 

[Dr. Yes]

This is what I was about to post, before reading the whole thread:

"You know, if we really wanted to be scientific (and if someone had the money) we could ask one of the folks who tested positive at VIPdx to also get tested at CD..."

Then I saw hensue's comments. Hee hee.

Do it for SCIENCE, hensue!!!​

I can donate a one dollar and 22 cents toward your research.

 

[garcia]

Do we really know that CD has found no positives?

Its really beginning to look that way. Not just the (currently) 8 negative in the above poll. But there is a thread on CFSFMExperimental. Lots of people testing negative.

In particular there was this message:

"I am part of a "cohort" that was accepted as a study
group by CD--moms with CFS and their children on the autism spectrum.
When our results came back last week, *all* of the results were
negative."

 

[Countrygirl]

XMRV results for autism

Its really beginning to look that way. Not just the (currently) 8 negative in the above poll. But there is a thread on CFSFMExperimental. Lots of people testing negative.

In particular there was this message:

I have just posted on the autism thread that I have read a claim on autismcalciumchannelopathy website that an as yet unpublished report by the WPI found 40% active XMRV in a small study of autistic children while 'nearly' 60% were positive for XMRV antibodies. Interesting. I wonder if they would get negative results at C.D ?

 

[kurt]

too early to make assumptions

I have posted a lot on this topic before, but will say again, it is WAAAAY too early to make any assumptions about testing.

I was part of the CD replication study, and tested negative, as did my daughter. In order to understand this better I studied PCR testing, talked with CD, spent a lot of time reading research on testing for MuLV type retroviruses. My conclusion is that until many replication studies are completed, including some parallel tests (two types of tests run together, such as CD alongside CDC or WPI), we just will not know.

There is every possibility that it is WPI who is producing false findings. This has happened before in testing for MuLV type retroviruses, there is a huge literature, one summary of research listed over 500 studies looking for retroviruses in all types of diseases, particularly autoimmune diseases. In nearly every case there was early excitement, followed by disappointment as the false positives were uncovered. One problem is that MuLV antibodies can cross-react with endogenous RVs, (HERV), which are active in many diseases, including CFS (per research at Tufts). Then there is the issue of biomarkers and selection of test cohorts, we know WPI did NOT use a sample of average PWC, like those of us on this forum, they had some of the worst cases in their sample.

I certainly do not know what is 'really' going on, but I do know from what I have studied that there is no reason to trust one lab over another at this point. The fact is that CD gets positive results every time they test a true XMRV positive sample, such as from prostate cancer. Their test is NOT faulty, it works 100% of the time with known samples, that is far better than the average test. That is not a made-up number, they have run hundreds of samples and always get it right.

Another fact I learned from CD is that they are testing for every known mutation of XMRV, including the 6 SNPs found by WPI. So when CD says someone is negative, I believe that is probably true.

As far as testing, I hope people are noticing how many negative results VIP is producing. None of this is happening in a vacuum, nobody is likely to get rich off of this testing at this point, all the labs are probably losing money. These are all smart people trying to solve a complicated problem. I think we need to leave the CFS politics out of this one and let science reveal things on its own timetable, and not make assumptions about what tests are good or bad at this point. Nobody knows the answer to that yet.

 

[Dr. Yes]

Hi Kurt

Then there is the issue of biomarkers and selection of test cohorts, we know WPI did NOT use a sample of average PWC, like those of us on this forum, they had some of the worst cases in their sample.

Not sure what you mean by "average PWC"; do you mean endemic rather than epidemic cases? From what I've heard here and on other sites there is a significant number of PWC who appear to be part of 'mini-clusters', though I don't know if anyone has done formal epidemiology studies on any of these.

As for the 'worst case' concern, I've seen that discussed on this forum before (you're right - that may have been by you, come to think of it!)... I found from my own (past) discussions with Ablashi and others re: HHV-6 that virologists do like to sample the most ill patients as it increases the chance of detection, especially of viruses that are known to 'hide' or become latent in many cases (like HHV-6 and XMRV, in their respective ways). So I think that is actually one of the strengths of the WPI study.

[Btw, I think there may be a few of those "worst" cases on this forum, you know...myself included! Coincidentally (??), I was on vacation near Incline Village at the same time as the outbreak there, and actually got sick with a mild URI, but recovered normally. (I was a kid at the time.) Who knows...I once consulted with Komaroff, who didn't think a connection was likely... ]

 

[Recovery Soon]

Huh????

There is every possibility that it is WPI who is producing false findings.

I am not going to pretend to understand the research at anywhere near the complexity of those with backgrounds on this forum. But I don't see how the above statement could be warranted in light of the rigorous analysis given this study by SCIENCE.

Yes, time will tell. Replication efforts need to come in from all sides. But it sure doesn't seem that "every possibility" exists that WPI produced false findings. Yes- it's possible- but this statement makes it sound like replication is a shot in the dark. It doesn't seem that way to me. Given my understanding of this study, again a laymen's understanding- not trying to compete with anyone for best scientist on the CFS forum- it seems that WPI dotted their I's and crossed their T's. My understanding is that they tested and retested each sample 5 different ways.

If I were to bet on this study, all CFS politics and emotions aside, it seems clear to me that SOMETHING has been unearthed in the WPI study. Not that every possibility exists that its all crap.

How significant that something is, or how it will ultimately affect CFS, is another subject.

 

[Alice Band]

I'm a survivor of an epidemic around the same time as the Incline Village one, so the patients used in the WPI cohort are the ones that I am interested in.

XMRV may not be an answer to the whole puzzle but it may be a start.

 

[fresh_eyes]

But it sure doesn't seem that "every possibility" exists that WPI produced false findings.

WPI, Cleveland Clinic, and National Cancer Institute.

 

[kurt]

I am not going to pretend to understand the research at anywhere near the complexity of those with backgrounds on this forum. But I don't see how the above statement could be warranted in light of the rigorous analysis given this study by SCIENCE.

Yes, time will tell. Replication efforts need to come in from all sides. But it sure doesn't seem that "every possibility" exists that WPI produced false findings. Yes- it's possible- but this statement makes it sound like replication is a shot in the dark. It doesn't seem that way to me. Given my understanding of this study, again a laymen's understanding- not trying to compete with anyone for best scientist on the CFS forum- it seems that WPI dotted their I's and crossed their T's. My understanding is that they tested and retested each sample 5 different ways.

If I were to bet on this study, all CFS politics and emotions aside, it seems clear to me that SOMETHING has been unearthed in the WPI study. Not that every possibility exists that its all crap.

How significant that something is, or how it will ultimately affect CFS, is another subject.

All I mean by 'every possibility' is that there are many ways the WPI study could have given false results. This study has not been challenged or explored very much yet. In fact, Science has a venue for debate, rebuttals and comments can be submitted by other scientists. That takes a few months, but eventually we should see some qualified discussion of the facts of the WPI study. That also shows that Science knows that they are not the 'final word' on any scientific topic.

I know the WPI study looks very solid. However, there is a long history of similar claimed breakthroughs looking for retroviruses in other illnesses. There are many possible confounds to the WPI study. I am not saying what the eventual outcome will be. All I am saying is that the process is just starting with XMRV in CFS, and people here are acting like XMRV is an established fact so any lab that does not find it in 'my CFS' is obviously flawed, but that is just not the case.

WPI, Cleveland Clinic, and National Cancer Institute.

They all were involved in the original study so that does not count as validation. In fact I believe the WPI test originated at the NCI (Silverman) and probably they all ran the same test. That does not validate the testing for CFS in an objective sense. Multiple outside labs must build their own tests, and use different CFS biomarkers, to validate the existence of the XMRV virus in the entire CFS population (which is WPI's claim, that XMRV is unbiquitous in CFS). There are thousands of medical labs in the US alone, I am sure there will be many replication studies, we just need to be patient.

I find it interesting that so many PWC are critical of the US Govt and their handling of CFS, but then ignore the fact that it is the NIH (parent of NCI) who is supporting the XMRV research and people now use their involvement as some type of credibility factor.

Hi Kurt
Not sure what you mean by "average PWC"; do you mean endemic rather than epidemic cases? From what I've heard here and on other sites there is a significant number of PWC who appear to be part of 'mini-clusters', though I don't know if anyone has done formal epidemiology studies on any of these.

As for the 'worst case' concern, I've seen that discussed on this forum before (you're right - that may have been by you, come to think of it!)... I found from my own (past) discussions with Ablashi and others re: HHV-6 that virologists do like to sample the most ill patients as it increases the chance of detection, especially of viruses that are known to 'hide' or become latent in many cases (like HHV-6 and XMRV, in their respective ways). So I think that is actually one of the strengths of the WPI study.

[Btw, I think there may be a few of those "worst" cases on this forum, you know...myself included! Coincidentally (??), I was on vacation near Incline Village at the same time as the outbreak there, and actually got sick with a mild URI, but recovered normally. (I was a kid at the time.) Who knows...I once consulted with Komaroff, who didn't think a connection was likely... ]

Sorry for any confusion, by 'average CFS' I just mean people with a broad range of severity, and not only the worst cases.

I do appreciate what you say about the value of worst cases in identifying pathogens. However, those worst cases must share some biomarkers with ordinary cases or there is no way to prove that what you find can be generalized to other cases. For example, we do not know how the two and a half samples sequenced in the Science study were selected. For example, were they lymphoma+ ? That is not a common biomarker for CFS. So that evidence does not help.

Also, antibody testing for MuLV is problematic, there have been studies that show cross-reactivity, it is a problematic test. So XMRV in CFS comes down to PCR evidence and other labs are not able to replicate the high incidence of XMRV in the CFS population. In my opinion we can draw an early conclusion and it is that things are not looking good for XMRV. But of course who knows where this will end up with XMRV. A few years from now things may look very different.

 

[fresh_eyes]

Hi Kurt. I was just pointing out that when you say it's just as likely that the WPI was mistaken, that also means the NCI and the Cleveland Clinic being mistaken, which is true.

...people here are acting like XMRV is an established fact so any lab that does not find it in 'my CFS' is obviously flawed, but that is just not the case.

I don't think that's a fair characterization of the very thoughtful examination of information that goes on on this forum.