XMRV Testing-FYI

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dmarie4301

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Wow, Lombardi took months to analyze a blood sample?? Where did you hear that? Dr. Klimas says there are 5 ways to test for it. I got to go back and listen to her video again and take notes. Maybe it wasnt so easy to find it in those blood samples, then. That's why we are getting so many negatives with the public.....the testing is too laborious and they need to work on finding an accurate, quick way to test us. Just speculation, but that could maybe partly answer my question.
 

dannybex

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In response to this quote, I dont get how they came up with high positives with the study, but cant do it with our blood from the community. Didnt they find 67% in the DNA??? Why the trouble now?? I dont understand. If they could do it in the study, why not with us??
Exactly my concerns. Mikovits was quoted as saying a couple of months ago that due to better testing methods they were finding it in 95, 98, even 99% of subjects tested...and now we have all these inconclusive results, multiple requests for retesting, etc...

Doesn't make sense.

At least not to my fogged out mushy brain. :confused:

d.
 
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starcycle

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Exactly my concerns. Mikovits was quoted as saying a couple of months ago that due to better testing methods they were finding it in 95, 98, even 99% of subjects tested...and now we have all these inconclusive results, multiple requests for retesting, etc...

Doesn't make sense.

At least not to my fogged out mushy brain. :confused:

d.
It seems a little suspect to me. I think they might be claiming those high percentages to try to give their research the appearance of more legitimacy.
The original study only claimed 67 percent. The claims of 95+ percent were just from a comment from the researcher after the fact, saying that "subsequent efforts" with more refined testing procedures, etc. had found more positives. But where is the evidence for this other 30 percent they are claiming? Has anyone seen any documentation of this alleged other 30 percent who supposedly have XMRV, or the antibodies, or whatever the claim is?

Because let's face it: what would you rather fund, a study that said 67 percent of people had something, or 95+ percent? If they claim higher numbers, they can generate more interest and possibly more backing. It makes it seem more like a "slam dunk." I think as things proceed the numbers might start to become more conservative, and sad to say XMRV itself might even pan out to be just another false or overly hyped lead. In the meantime, they can possibly generate some grant money for themselves, money for the labs from people impatient to get the test, etc. Sorry to sound so cynical, but after a while seeing how this corporate medical complex works, you can't help but have some doubts.

Another thing that seems highly suspect to me in this respect are the prostate cancer numbers. The study showing the prostate cancer link says that 27 percent of the prostate cancers they looked at had evidence of XMRV associated with them. But in light of the CFS claims, that number doesn't really seem to make sense. In the CFS research (and subsequent claims), 99 out of 101 people (98 percent) with CFS supposedly had XMRV, while only 3.7% of healthy non-CFS people had the virus. In practical terms, that would suggest that almost every person who gets XMRV eventually winds up with chronic fatigue.

But if 27 percent of prostate cancer patients also have XMRV, then statistically speaking that would mean that virtually every one of those people with prostate cancer would also have to have had CFS. Doesn't that seem very unlikely, even just on the surface? Not to mention how unlikely it would be that they all had both, and no one knew or bothered to mention that all these test subjects in the prostate study also had CFS? The entire scenario is just too implausible, imho.

Again, I hope I am totally wrong and that this pans out to something meaningful. In the meantime, I'm not jumping to do any testing out of pocket for something that 1) there would still not be any treatment for, and 2) in the eyes of the mainstream medical profession would prove nothing more than you have XMRV or XMRV antibodies. I can hear the massive cries of "so what" from primary care physicians all over the country. I have massive EBV titers, and that's what they say for that. I also have chronic leukopenia, and they shrug their shoulders over that, too. Who knows, they would probably even try to claim that XMRV is evidence of some psychiatric disorder for all we know. I also don't see how you can sue any doctor over XMRV when they didn't even know it existed or did anything. I'm not a lawyer so maybe there is a way. I just don't see what it's going to prove to walk in anywhere -- whether a courthouse or a doctors' office -- waving around an XMRV lab. Until any of this is more established and trickles down into the "conventional wisdom," they're all just going to say "so what."
 

fresh_eyes

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Hi guys. I can understand the skepticism here, but I don't agree. First of all, making unfounded claims would *not* give WPI more legitimacy - they would actually immediately lose legitimacy when the results aren't replicated.

Also, I don't understand those numbers. If the US has 320 million people, and approx. 1 million with CFS, that would mean .32% - which would leave...um...3.38% (about 10 million) XMRV+ without CFS. Plenty of room for folks to have prostate cancer in there.

We are probably getting more negatives with the public because we are self-selecting, whereas the study cohort was chosen by CFS specialists to be most likely to have a detectable viral load.
 

dipic

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No offense but I think the WPI are a little smarter than to make up numbers for more funding...
 
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starcycle

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Hi Starcycle. I can understand your skepticism, but I don't agree. First of all, making unfounded claims would *not* give WPI more legitimacy - they would actually immediately lose legitimacy when the results aren't replicated.

Also, I don't understand your numbers. If the US has 320 million people, and approx. 1 million with CFS, that would mean .32% - which would leave...um...3.38% (about 10 million) XMRV+ without CFS. Plenty of room for folks to have prostate cancer in there.
Well let me first clarify that I am not suggesting that they haven't found a correlation between people with CFS/ME and having the virus. I believe they have. I'm mainly skeptical at this point that the number is as high as they claim (98 percent). I think they might be overstating the case to drum up more interest and support (not a bad thing). I hope I'm wrong, but I'm waiting to see more validation of that 98 percent. I think the future numbers will probably be closer to the 67 percent they originally (and "officially") reported.

Regarding prostate cancer, yes, there's plenty of room for people to have prostate cancer in the numbers you state, but look at it this way: according to the CFS claims, almost *everyone* who has CFS has XMRV, and almost no one who doesn't have CFS has it. So the question is not how many have CFS, but how many people have prostate cancer every year? Close to twenty seven percent of all people with prostate cancer would also have to have CFS, extrapolating from the two studies. So even if 27 percent of all people getting prostate cancer is not more to begin with than those who have CFS, it still would seem highly unlikely to me that almost 27 percent of all prostate cancer patients also have CFS. But they would have to, according to the post-study claims of the CFS researchers. 98 percent of all people with XMRV have CFS/ME according to them, and necessarily that would have to include the prostate cancer people who have XMRV.
 
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starcycle

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Is that folks on this forum, in the majority, do not have XMRV.
You know that how? :confused:

Sorry, I just don't know on what basis you're making that claim.

Folks who were studied for the Science article for the most part were XMRV positive, and have XAND.
I don't understand. More than twice that number who were in the study didn't have XMRV, over 230 something, I think (or was it 280?). Almost everyone who had CFS had XMRV (according to the post-study claims, at least), and almost no one who didn't have CFS had XMRV (3.7%).

What the study researchers are suggesting is that almost everyone who has CFS/ME has XMRV (or XMRV antibodies), and almost no one who doesn't have CFS has XMRV. It has nothing to do with this particular forum, unless you are saying that there are members you know of here who were in the study? :confused:
 
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Terri

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Waiting

My first impulse was to get the test but after reading many of the posts here and various articles online I think it is best to wait, although to get a positive result of anything on a test just to prove to friends, family and Dr's (and maybe even myself?) would be nice. Not that I am really hoping I have a retro virus but I have been ill for so long with no answer and am so tired of people saying "you need to go to a doctor and find out what is wrong with you"

I too have spent tens of thousands of dollars on Dr's, treatments and chasing one theory after another. I am going to have the HHV-6 test but what is CMV?
 
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starcycle

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My first impulse was to get the test but after reading many of the posts here and various articles online I think it is best to wait, although to get a positive result of anything on a test just to prove to friends, family and Dr's (and maybe even myself?) would be nice. Not that I am really hoping I have a retro virus but I have been ill for so long with no answer and am so tired of people saying "you need to go to a doctor and find out what is wrong with you"

I too have spent tens of thousands of dollars on Dr's, treatments and chasing one theory after another. I am going to have the HHV-6 test but what is CMV?
cytomegalovirus.
 
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starcycle

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That applies to members of this forum. The way I interpret that data, we have 16 people testing/reporting to date. Positives are 6 people, negatives are 10 people. Positives are less than a majority. Sure, its pretty sketchy data, but is all we have. That's my logic. And of course, the data inferences may change with time. Right now the supported conclusion is that folks here for the most part, do not have XMRV.
Okay - I didn't know about those numbers. I see what you're saying now.

Those numbers would be even lower than the original study, so that is more in line with what I suspected before, i.e., that the original claims are overexaggerated. Overall it's too early to tell, though.

Personally I think it's better for most people to wait for the testing, if at all possible, until something is standardized. I think that would avoid a lot of potential pitfalls. I myself am very impatient to be tested, but I think it's better to wait say 3-6 months to see what develops. I hope it wouldn't take that long based on the "few weeks" claim, but it seems more like a few months is more realistic.
 

Kati

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Levi

the test currently is for ACTIVE INFECTION, and does not currently test for a latent virus. So if 6 people out of 16 tested positive, they have active infection. The other 10 either have latent infection, or no infection of the XMRV kind. It doesn't mean they are inventing a disease.


Incidently, I just recieved a test kit from VIP DX 10 minutes ago and while I thought I'd wait to be tested, now I am thinking that I'd like to know too- so confusing.
 
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starcycle

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And draw a Ven diagram. The circle with folks that were selected as CFS patients by WPI Petersen/Mikovits et al, is not the same circle that represents folks on this forum that believe that they are CFS patients. So there is no exaggeration at all. From listening to Judy Mikovits presentation at UOP last month, I believe that the M.D.'s that provided the blood of CFS patients for the Science article were a select group of physicians that WPI believed had the ability to differentially diagnose CFS from other unexplained illness.

In addition, they may have employed additional data with regard to patient biomarkers in relation to a sophisticated set of Random Forest algorithms in order to narrow down and refine the positivity of the results. We are not doing anything like that on this forum. We are merely testing for XMRV because we THINK we probably have it. Not the same kettle of fish.

My sense of things is that all in all, the Science article conclusions vis-a-vis XMRV are holding up just fine, and XMRV will likely be diagnostic for XAND, a subset of CFS. For those of us left in the remaining subset of CFS/unexplained illness/Reeves Disease, you will probably be no worse off than you were before the Science article. Other than having dashed hopes for having an XMRV test result form to wave in front of your M.D.'s nose. We can survive that.
I'm still bothered by the 27 percent of prostate cancers showing the virus. If that number corresponds to the 3.7 percent of the population who supposedly have XMRV and who do not have CFS, it would be more convincing. It seems very high, though. But I don't know the number of prostate cases each year - I guess that's the number to find.
 

fresh_eyes

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Hi Star. I was with you up til this bit:

98 percent of all people with XMRV have CFS/ME according to them, and necessarily that would have to include the prostate cancer people who have XMRV.
It's vice-versa - 98% of CFS people have XMRV (per the study). About ten times more people would have XMRV w/o CFS.

ETA: Prostate cancer incidence: approx. 1 in 11 men will have it in their lifetime = approx. 4.5% of the general population. 27% of that may be XMRV+, call it 1.2% ?
 
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starcycle

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Hi Star. I was with you up til this bit:



It's vice-versa - 98% of CFS people have XMRV (per the study). About ten times more people would have XMRV w/o CFS.
Yes, you're right. I misstated that, I think leading to a lot of the confusion, apologies (hypothyroid brain drain :-o).

98 percent of the people they pre-selected who they believed had CFS also had XMRV. 3.7 percent of people who don't have CFS (yet?) also show XMRV.

I don't know - it's just getting more depressing the more I think about it. If you don't have XMRV they will just say you don't "really" have CFS, and if you have it they might even still say you don't. Like Levi said, in the first case you're not really in any worse shape than before, but in a sense you might be because they can use the negative result against you even more than before, without the result.

Just some CFS frustration. I hope they can expedite this process and we can start getting some answers/treatments. It feels like it's taking forever.
 

gracenote

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another lab, another study

One more lab is trying to develop a test for XMRV.

I just got a call from my doctor's office and was asked if I would once again donate blood to be tested for XMRV. This is for another study being conducted by a research institute in California who will be testing patients in a private medical practice. They want to test those of us whose blood was previously sent to Mikovits for comparison. No results have come back from the original blood draw that was performed in mid September. This new test will only be a PCR test. I'm not sure why they will be drawing two vials of blood, but I'm happy to donate my blood in a helpful way.

I feel like I'm being greedy being tested by two separate labs and wish I could share one of them with one of you. I will post results if results ever do come.
 

dannybex

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the test currently is for ACTIVE INFECTION, and does not currently test for a latent virus. So if 6 people out of 16 tested positive, they have active infection. The other 10 either have latent infection, or no infection of the XMRV kind. It doesn't mean they are inventing a disease.


Incidently, I just recieved a test kit from VIP DX 10 minutes ago and while I thought I'd wait to be tested, now I am thinking that I'd like to know too- so confusing.
Hi Kati,

Okay, now I'm really confused. Aren't people getting tested for both active and latent infections? This poll shows the majority coming back negative (although of course only a very small number have reported back)...

http://forums.aboutmecfs.org/poll.php?do=showresults&pollid=21
 

Kati

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Hi Kati,

Okay, now I'm really confused. Aren't people getting tested for both active and latent infections? This poll shows the majority coming back negative (although of course only a very small number have reported back)...

http://forums.aboutmecfs.org/poll.php?do=showresults&pollid=21
Danny, there are more tests to come, for instance the antibody testing which is not available as of yet. Take HIV. When you get an HIV test, they test for antibodies- you test positive, it doesn't necessarily means you have AIDS, you have been exposed to HIV. The retrovirus is AT LEAST latent. (to have active infection, you need other markers, like CD-4 counts)

Now I know others wil have better explanations than I do for active infection- this is what my understanding is- the PCR and culture technique shows PRESEMCE of the retrovirus in the blood.

So of what Dr Klimas and Bateman said in their lectures, (worth watching more than oce in my opinion) the testing available comercially is not the end if you test negative. It just means you don't have an active infection. Some people wil say it's a waste of money to be tested at the moment, because if you're positive, there are no current treatment available unless you are willing to be a guinea pig.

I would argue that knowing that you are positive will make you gain more sympathy from your own doctor that thinks it's in your head, to say the least.It may also give you access to further testing that your doctor previously denied. And disability insurance may even give you a break with rehab, GET and back to work. Go figure.
 
K

_Kim_

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Hi Kati,

Okay, now I'm really confused. Aren't people getting tested for both active and latent infections? This poll shows the majority coming back negative (although of course only a very small number have reported back)...

http://forums.aboutmecfs.org/poll.php?do=showresults&pollid=21
Looks like it's even-steven. 6 positive (by either test) and 6 negative. There's confusion about latency. I think that both tests offered now test for active infection and the (unavailable) antibodies test determines a latent infection.

One of the notable things about the polls are that there have been no reported results from anyone who classifies themselves as having mild to moderate CFS.
 

Kati

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I am sorry for the confusion- maybe I am wrong too-

What I want to say is a current negative doesn't mean negative forever- or absolute negative. It just means that the current tests failed to show the presence of the virus.

The retrovirus is a teeny weeny thing, reproduces slowly and hard to find- hence they have to culture the cells (force them to reproduce) to find evidence of it. (active infection???)

The tests that are missing commercially, so far, is the antibody- latent infection and DNA testing (in my opinion) latent infection.

I may be wrong but it's my interpretation.

On the VIP DX website, they say an expert is required to interpret the results. Unfortunately for the most of us we are left in our own hands. :eek: