Newly refined test from the Whittemore Peterson Institute

[MEKoan]

(just got through licking my plate er. . . having dinner)

OT: hahahaha hehe hehehe hahahahaha oh my hehehe haaha

 

[rebecca1995]

parvo wrote:

Here's my bet: I think WPI and the Blood Review HAVE validated and improved the virus culture test for XMRV. Specifically, they HAVE validated the test at MULTIPLE labs - above and beyond NCI and the Cleveland Clinic. And we won't hear this officially until the formal Blood Review announcement (whenever that is).

Parvo, I completely agree with your post. My first thought when I read the press release was that they'd really made an advance with the culture test--and multiple definitely means more than two labs!

I don't think you'll have egg on your face!

Another thought I had is that perhaps they're finding the PCR is unnecessary because those who are PCR-positive are also positive by culture. Doing both tests could be redundant. Do we know anyone on the board who was positive by PCR but not by culture? It could be a money saver for patients.

 

[wornout]

Thank You George. You could be right about them wanting to have test in place before any publicity?

Parvo I love your post. I'm a WPI fan and have become obsessed with following the XMRV research.

I think the ones that will be wearing egg on their faces will be Wessely and his followers.

 

[kurt]

Do you have a link to that study?

Here is a link to the WPI May 2009 virachip study presentation.

Does introducing a Western Blot test get around any of the problems mentioned in the critiques of the testing methods?

No, WB still uses MuLV antibodies. The culture test works a little differently but still is an antibody study, after the culture amplification process.

I'm sorry but I don't see how there's a conflict of interest. If the VIP lab was a nonprofit organization giving its money to and being controlled by a for-profit company, that would be, but that is the precise opposite of the situation in question. In addition, is states clearly that the test license is non exclusive, which means any lab could purchase a license and conduct the same test.

As I see this the direction of the conflict is immaterial. According to Wiki, COI is defined as a situation where the interest of one controlling group can corrupt the motivation for an act by the other. In this case VIP is the older company, and its owners formed a non-profit that in essence sends it business. That would be fine in most cases, but in this situation the non-profit WPI gained substantial trust from patients partly on the basis of its charitable nature, without revealing the COI. Saying that there was 'support' is not the same as revealing ownership. I only mention this as a technicality, I do not know of any actual COI problems right now. But people are criticizing the IC study on this basis so it is only fair and objective to observe that the WPI situation is also potentially conflicted.

 

[wornout]

As I see this the direction of the conflict is immaterial. According to Wiki, COI is defined as a situation where the interest of one controlling group can corrupt the motivation for an act by the other. In this case VIP is the older company, and its owners formed a non-profit that in essence sends it business. That would be fine in most cases, but in this situation the non-profit WPI gained substantial trust from patients partly on the basis of its charitable nature, without revealing the COI. Saying that there was 'support' is not the same as revealing ownership. I only mention this as a technicality, I do not know of any actual COI problems right now. But people are criticizing the IC study on this basis so it is only fair and objective to observe that the WPI situation is also potentially conflicted.

Can you give more details on how the WPI and VIP relationship Is the same as people criticizing the IC study I'm confused

 

[kurt]

Can you give more details on how the WPI and VIP relationship Is the same as people criticizing the IC study I'm confused

I did not mean to say that the WPI/VIP COI is the same as all IC study criticism, just the fact that there is a COI issue in both situations. They are obviously not identical situations. Some of the IC study authors have a vested interest in a negative outcome for that study, due to reputation, maintaining established views of ME in the UK, etc., so that is a basic COI issue. Anyway that is the accusation.

 

[wornout]

Thank You Kurt. I do tend to get confused easily.

 

[dmarie4301]

My take on this is that they backing way off the PCR test. I don't know how else to read it.

Culture In/PCR Out - Oddly enough, they said that the culture test is "the only scientifically validated methodology to find XMRV" which puts into question the validity of the PCR test. In fact, the message indicates the WPI is backing away from the PCR test, heretofore, the main focus of validation efforts, stating "At this time no single PCR or whole blood assay alone has been validated as accurately detecting XMRV, and is therefore not an appropriate way to study or diagnose the presence of the virus."

This means that your PCR tests, while certainly not meaningless, are not diagnostic yet. This is quite a change. XMRV is a new bug whose genetic variation from place to place is unknown; until more is known regarding how XMRV differs from location to location its going to be impossible to create a 'validated' test for it. The DHHS in cooperation with several labs is reportedly doing the work.

I checked VIPdx website. As of today, it appears that you can only order a PCR/Culture test now, for $650. When I last checked, you could order the culture test only for (I thot for $250, but may be wrong). So I am wondering, too, Cort, why WPI is backing off the PCR testing. Is it because it's not bringing in as good results as the Culture test has been doing? Im a bit confused. Kurt was mentioning the new updated test is including an antibody test, but I dont see any mention of this. the VIP site doesnt show an updated test, at least yet. Can anyone clarify this???

 

[dmarie4301]

parvo wrote:



Another thought I had is that perhaps they're finding the PCR is unnecessary because those who are PCR-positive are also positive by culture. Doing both tests could be redundant. Do we know anyone on the board who was positive by PCR but not by culture? It could be a money saver for patients.

I know someone who was negative with PCR and positive with the Culture throug VIP. They are not necessarily positive for both, or negative for both.

 

[CJB]

<s>

OK, this is the part I find really interesting - for what WPI doesn't say, or maybe what they can't say. And since I'm a betting person, and admittedly a confessed XMRV optimist, I'll make a wager, with a promise to put up an avatar (for a week), of egg-on-face if I'm wrong. Here's the bait:

<s>

Here's my bet: I think WPI and the Blood Review HAVE validated and improved the virus culture test for XMRV. Specifically, they HAVE validated the test at MULTIPLE labs - above and beyond NCI and the Cleveland Clinic. And we won't hear this officially until the formal Blood Review announcement (whenever that is).
​

So... any takers for my friendly egg-on-face wager?

That's exactly how I read it too. It sounded like they had some ass in their britches, and that's what we've all been hoping. That they're testing the blood supply and finding links and proving causality. If they've found one incidence of someone becoming ill with CFIDS/ME after a blood transfusion, that's proof (was good enough for HIV/AIDS) that it's causal.

My reaction after reading the article was that they've committed to the XMRV which, even if causal, will not be found in all of us and I'm afraid XMRV- PWC will be left behind.

Thank all of you with the science brains for picking through this and explaining it. I think I can finally wrap my brain around possibly why the UK study found zero.

 

[Kati]

Ok, maybe it's just because Parvo and I are both Canadians - an optimistic people, perhaps - but what Parvo says makes a whole lot of sense. I'm not sold on the multiple labs angle but maybe if I had a little poutine, I could see that, too.

I have been thinking that the most likely motivation to hurry a Weasely study would be to cover the tushies of anyone who has been denying patients medical services by "proving" that there is no XMRV in England :innocent1:

I can see no other rational explanation for running with scissors!

What am I saying! "Rational"? Silly me!

Koan, count me in the optimistic Canuck group. The Whittemore family did not spend millions for nothing, for one, Dr Peterson is not into any kind of controversial activities, has been there since the 1980's and wants more than anything for all of his patients to get better. They have been working at it for a couple of years and it sounds like they are way beyond the Science article at the moment but are bound by embargo.

On the other hand, like someone mentioned, Wessley has lots to lose, and welll. where the heck is Bill Reeves?:worried:

 

[kurt]

You think the owners of VIP Lab formed the WPI to send VIP business? The whole XMRV publication in Science was a ruse to send business to VIP? And this is a conflict of interest because VIP returns its profits to WPI? You have got to be kidding me. Give me a break! And what is "the IC study"?

I did not say that, simply that there is a conflict of interest, and that VIP was formed first, in 2001. And WPI does send business to the older, for-profit company. That is a fact. I did not assign a motive, and do not know how you read that into my statement.

The IC study is the UK study, by Imperial College.

 

[kurt]

are there tests to validate CFS other than XMRV? i am as sick as one can get and nothing has really been abnormal in my blood other than slightly elevated IL-2. my RNase L and elastase was off the charts but no doctor i have met seems to care about this. finding evidence of retroviral infection in a human being is a big thing and not a normal finding. i would think this would be taken very seriously even if other markers are not.

There is no reason for any regular doctor to take seriously an XMRV infection at this time, if it is present, because no causal link has been proven, and no causal model either. The word 'retrovirus' seems to get attention, certainly, due to HIV, but there are many retroviruses and few are pathological, in fact you have over 4,000 endogenous retroviruses in your own DNA, we all do, and they are known to be activated more in PWC than in controls.

There are many good tests out there, look at all the tests at the VIP Dx website, for example. There are also oxygen stress tests but they should be given only by a doctor who knows CFS well. Working with a CFS doctor is very important for people who are very bad off. They know what to test, have some idea how to treat. Other doctors can't do anything so they sometimes find a way to brush off CFS patients.

 

[rebecca1995]

One difference between the WPI/VIP and Simon Wessely, when it comes to conflict of interest, is that WPI has now issued a very public press release that gets everything out in the open. They make clear that no conflicts of interest exist; they state,

...the Whittemore family put their interest in VIP Dx into a trust to benefit WPI.

If Wessely truly has nothing to hide, why doesn't he come forward in the same way?

 

[parvofighter]

Koan, count me in the optimistic Canuck group.

Koan, Kati, and Honorary Canucks: This is for U!

 

[kwietsol]

4. As with the prior XMRV tests, there is no real guidance for patient or physician. What does one do with the results of this test?

If I were a pregnant and had CFS, I would get tested for XMRV. If I turned up positive, I would consult with an expert on HIV mother/fetus transmission about birth options and about breast feeding.

Unfortunately, transmission does occur within families (see link below). I personally know a family where both the mother and son have CFS (and are XMRV positive) and also a family where both the husband and wife have CFS.

Fortunately, transmission is rare but when it happens, it compounds the tragedy. Not only is a caretaker lost but twice the care is needed.

A study by the NJ CFS Association found the following:

"The prevalence of CFS was higher in genetically unrelated household contacts and in nonresident genetic relatives than in the community, indicating that both household contact and genetic relationship are risk factors for CFS."
http://www.informaworld.com/smpp/content~content=a902814042~db=all~jumptype=rss

 

[MEKoan]

People who test positive can make informed decisions about donating blood or organs. They can inform their dentist who may be at risk. There are many reasons why people should know.

I think it is very odd that we (myself included at first) assume that there is no reason to know a thing unless one's doctor can do something about it. Whether medicine can fully understand it or rid us of it is not really the issue. If we are being made ill by a retrovirus and we might pass it to others, we have a right to know.

If the implications of infection are not fully understood, ok. We can understand that, we can make decisions, we're not idiots, we're just ill.

 

[usedtobeperkytina]

CJB, I want in on some of that action. But I am with you. But I got my hint from comments from CAA. CAA is in on the group just formed that is looking into the blood supply. So I think they would be "in the know." And Vernon made some very strong comments against the UK study. She said they are "looking forward" to the study that the group is doing that is using the same method. I think that means there is something in those results.

And, as you said, Mikovitz is sure taking a strong stand. She is certainly confident. If I did a test and then someone came out with a published study that showed something opposite of what I found, I would go look again. Before I came out with public criticism, I would double check myself.

So I think she has some basis for such bold statements. Remember now, this lady, Mikovitz, has been a researcher for 20 years, many of them at NCI, a respected research institution.

And by the way, do y'all notice how much of this drama involves women? Batemam, Klimas, Mikovitz, McClure, DeFreitas, etc. I know there are some men: Peterson, Cheney, Reeves, Simon, White, Bell, Lapp, Komaroff. But compared to other scientific discoveries, seems we have more women in the leadership role. I guess that is one good thing. CFS research has no glass ceiling, just no money and no respect. Hmmmm, could there be a reason for that? Could it be that the no respect has something to do with the fact that so many who are taking the lead are women?

Tina

 

[Kati]

Koan, Kati, and Honorary Canucks: This is for U!

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Parvo, tank you so much!!! T-shirt is fabulous.

 

[Kati]

People who test positive can make informed decisions about donating blood or organs. They can inform their dentist who may be at risk. There are many reasons why people should know.

I think it is very odd that we (myself included at first) assume that there is no reason to know a thing unless one's doctor can do something about it. Whether medicine can fully understand it or rid us of it is not really the issue. If we are being made ill by a retrovirus and we might pass it to others, we have a right to know.

If the implications of infection are not fully understood, ok. We can understand that, we can make decisions, we're not idiots, we're just ill.

I would like to add to Koan that one person in this forum went to Mexico and purchased AZT and started feeling better after using it. Not scientific, but hey, if it makes you better, wouldn't you like to take a pill (that is under supervision of a doctor of course) ?