CDC XMRV Retrovirology Study on CFS Published

[V99]

I'm sure Frank ruscetti said xmrv can be found in plasma. Isn't that what Vernon ment about the tubes.

 

[Eric Johnson from I&I]

> They must have run the assays (or samples), don't you think? They must have asked for them - the question is why didn't they use them and what were the results?

They ran them and got all negatives according to Mindy Kitei. She pretty much reported the MMD/ORTHO news 6 or 7 days before MMD/ORTHO did, so I believe what she says. Furthermore, she asked CDC about it quite precisely in an interview and they artlessly ducked the question.

 

[V99]

They probably had it fixed in their minds that XMRV was contamination, and then the NIH/FDA study came along to upset them. Obviously they are too arrogant not to publish, and admit they should have had a test able to detect it in those samples.

 

[John Leslie]

The CDC lead author had XMRV positive samples for 9 months. The CDC tested the WPI positive samples and could not find XMRV. Rather than tell everyone that fact and then say: "We are going forward with a method that may or may not work, with patient samples that may or may not be as good as samples we could get from subscribers to Newsweek." Anything else they did or did not do after that failure is irrelevant. I have a lawyer in a very small firm in California working on this matter, but I think someone who knows a lot more about this should be confronting the CDC on this "study" and what it really means.

 

[Dr. Yes]

They must have run the assays (or samples), don't you think? They must have asked for them - the question is why didn't they use them and what were the results? That's such a big puzzle - that goes to the heart of how they view the WPI and what its results mean. They had 8 months! They must have done something with those samples.....

I would guess that someone there ran the assays, as Mindy Kitei's sources said they did.

Disturbingly, this now makes THREE negative studies that failed to report that samples were sent to and/or received from the WPI. In fact, the WPI had to reveal this information themselves in each case. You would have thought that the CDC, having seen that the WPI made this information public in the case of the other two studies, would have come clean on their own. Though perhaps they were counting on the fact that not as many people would be aware of any subsequent WPI press release...

They didn't use them in the study - why? They said they didn't have validated XMRV positive samples....thats true if you mean validated by several sources.... They threw an XMRV plasmid for Dr. Silverman in blood sample - that's very straightforward - you know XMRV is in there - you put it in there and you know what concentrations it's in - so you know how far your tests can go; there's something to be said for that.

A human sample is different - you don't have those set parameters to work with so it's messier...but I would imagine finding XMRV in a native blood sample is different from finding it in a spiked blood sample...how I don't know.

My understanding is that when you 'spike' a blood sample - or a water sample - with XMRV plasmid you are essentially just dumping retrovirus into the fluid, not necessarily making sure that it is integrated into the cells. That makes it potentially much easier to detect. When you test a human blood sample for XMRV, the cells may not be replicating and therefore the virus is not replicating -- especially if the sample is not fresh blood. Therefore you are very probably looking for latent virus that is hidden in host DNA. This demands a better method for detection, which is why the WPI, NCI, and Cleveland Clinic had to use RT-PCR and/or a culture step to pick up the virus. The difference between looking in a spiked control versus in a patient blood sample is, as Dr. Mikovits said in one presentation, like going from looking for a needle in a haystack to looking for a bowling ball in a bathtub.

The CDC lead author had XMRV positive samples for 9 months. The CDC tested the WPI positive samples and could not find XMRV. Rather than tell everyone that fact and then say: "We are going forward with a method that may or may not work, with patient samples that may or may not be as good as samples we could get from subscribers to Newsweek." Anything else they did or did not do after that failure is irrelevant. I have a lawyer in a very small firm in California working on this matter, but I think someone who knows a lot more about this should be confronting the CDC on this "study" and what it really means.

So what we need is for an inside source to come forward or at least provide some more evidence. In the meantime the CDC needs to be questioned persistently about the WPI statement and the (as yet anecdotal) reports that both they and an independent lab already tested the WPI samples.

 

[glenp]

Can email here:

William Switzer bis3@cdc.gov

HongweiJia hja@cdc.gov

Oliver Hohn HohnO@rki.de

Hao Quiang Zheng hzeng@cdc.gov

Shaohua Tang stang@cdc.gov

Anupama Shankar ashankar@cdc.gov

Norbert Bannert BannertN@rki.de

Graham Simons gsimmons@bloodsystems.org

R Michael Hendry mhendry@cdc.gov

Virginia R Falkenberg vfalkenberg@cdc.gov

William C Reeves wreeves@cdc.gov

Walid Heneine wheneine@cdc.gov

 

[thegodofpleasure]

I would guess that someone there ran the assays, as Mindy Kitei's sources said they did.

Disturbingly, this now makes THREE negative studies that failed to report that samples were sent to and/or received from the WPI. In fact, the WPI had to reveal this information themselves in each case. You would have thought that the CDC, having seen that the WPI made this information public in the case of the other two studies, would have come clean on their own. Though perhaps they were counting on the fact that not as many people would be aware of any subsequent WPI press release...

Thanks for this Dr. Yes. I know that the Van Kuppeveld study received samples from the WPI but which other -ve study are you referring to ?

My understanding is that when you 'spike' a blood sample - or a water sample - with XMRV plasmid you are essentially just dumping retrovirus into the fluid, not necessarily making sure that it is integrated into the cells. That makes it potentially much easier to detect. When you test a human blood sample for XMRV, the cells may not be replicating and therefore the virus is not replicating -- especially if the sample is not fresh blood. Therefore you are very probably looking for latent virus that is hidden in host DNA. This demands a better method for detection, which is why the WPI, NCI, and Cleveland Clinic had to use RT-PCR and/or a culture step to pick up the virus. The difference between looking in a spiked control versus in a patient blood sample is, as Dr. Mikovits said in one presentation, like going from looking for a needle in a haystack to looking for a bowling ball in a bathtub.

This is also good stuff to know about. I'd been wondering about the issues which influence test method validation and the significance of the Imperial College study using water instead of blood. Now I think I understand this better. Thanks !

TGOP

 

[Sean]

The difference between looking in a spiked control versus in a patient blood sample is, as Dr. Mikovits said in one presentation, like going from looking for a needle in a haystack to looking for a bowling ball in a bathtub.

:Retro smile:

 

[natasa778]

Thanks for this Dr. Yes. I know that the Van Kuppeveld study received samples from the WPI but which other -ve study are you referring to ?

while I cannot go inside Dr Yes's mind I am aware that Huber did receive samples, ran them, decided it was contamination... she didn't give many details in her presentation, just very quickly and vaguely skimmed over the slides. Her study was negative btw, has not been published yet and so far turned down by 2 journals.

 

[Dr. Yes]

Disturbingly, this now makes THREE negative studies that failed to report that samples were sent to and/or received from the WPI.

I know that the Van Kuppeveld study received samples from the WPI but which other -ve study are you referring to ?

Hi TGOP, I was referring to the Groom/Kerr study as the first study whose authors either sent samples to or received them from the WPI, or both. The authors of that study sent samples to the WPI. From Annette Whittemore's letter to McClure:

"We would also like to report that WPI researchers have previously detected XMRV in patient samples from both Dr. Kerr’s and Dr. van Kuppeveld’s cohorts prior to the completion of their own studies, as they requested. We have email communication that confirms both doctors were aware of these findings before publishing their negative papers. In addition, Dr. van Kuppeveld asked for and received reagents and a positive patient sample to determine if his testing procedures could in fact detect XMRV in a positive blood sample before he published his paper. We wonder why these materials were not used in his study which also failed to detect XMRV."

So the WPI was sent samples from Kerr and van Kuppevald's cohorts, and sent a positive sample to Kuppevald (confirmed positive) and 20 positive samples to the CDC... all in advance of study publication, yet not one of those authors made so much as a comment on the matter (until a reporter called van Kuppevald and put him on the spot).

while I cannot go inside Dr Yes's mind

So that's why I had that pounding headache last night...

..I am aware that Huber did receive samples, ran them, decided it was contamination... she didn't give many details in her presentation, just very quickly and vaguely skimmed over the slides. Her study was negative btw, has not been published yet and so far turned down by 2 journals.

I had forgotten about Huber's study. I hope (when and if she gets published) she mentions the WPI samples, but somehow I doubt it...

It really is ridiculous for some to have accused the WPI of being 'uncooperative' and not sharing samples. The reality is that the professional conduct of the authors of the negative studies has been disgraceful.

 

[eric_s]

tubes

I have contacted Dr. Bieger in Munich, Germany, who is offering a test for XMRV. When asked, if i have to come to Munich or if i could send blood to him, he replied that i could send it and that it should be "heparin blood".
That's no proof other tubes won't work of course, but it's another example for someone using heparin tubes, like Lombardi et al. and VIP Dx.

I wonder what would happen if you apply for benefits and say "I've never seen a doctor, i've been diagnosed via telephone".

 

[Bob]

I wonder what would happen if you apply for benefits and say "I've never seen a doctor, i've been diagnosed via telephone".

Good point!

If they used Reeves' telephone criteria to establish benefits entitlement, then I think that most of the population would be on benefits!

 

[taniaaust1]

I read all the bad science forum and actually thought that group seemed to be quite decent (i lot better then how i find the general poplution is towards those with CFS)...asking decent questions about it all in their scientific community and most seem to be keeping an open mind and just waiting to see what happens.. i hope people dont flood their group.

 

[taniaaust1]

My point, which I thought was obvious, was that if we were truly organized, we would be connecting with prostate cancer organizations, especially with regard to the latest generation of XMRV antibody tests described in my link.

Im thinking along those lines too.. the CFS community needs to start working with other communities over the XMRV stuff more.

A standarditized test is currently trying to be made. I think once that happens, everything will have a bit more hope. (as long as test is done sensitive enough)

 

[taniaaust1]

Cort,

This is where I get on my cohort soapbox. Who is 'US?' No wonder it is such a difficult subject.

We MUST stop comparing apples to kumquats! No wonder we're so confused, no one knows what they are studying. There is no shared language, no shared understanding. Patients, researchers and government agencies are still talking past each other - NO COMMUNICATION.

The research community has had 30 years to sort this out and we're still getting studies like the CDC XMRV debacle. When are we going to stop looking to the CDC to address this issue in a good faith manner?

Anything (past, present or future) short of the Canadian Consensus Dx criteria should be reclassified as a study of "persistent fatigue."

Better yet, reclassify everything that meets the CCDxC as a study of ME.

We can't wait for this to happen. It has to happen now. It needs to be THE top priority of both the IACFSME and the CAA.

What i dont get is so many other illnesses have recognised subgroups, so why dont we have offical recognised ones. eg take bipolar for instance.. bipolar 1, bipolar 2, rapid cycling bipolar, mixed bipolar, cyclothymic ... There are so many different illnesses in which are divided into many forms. Why on earth arent thdy doing this for CFS. Maybe this is something which needs to be pushed so we dont keep being left with stuffed up studies.

 

[Angela Kennedy]

What i dont get is so many other illnesses have recognised subgroups, so why dont we have offical recognised ones. eg take bipolar for instance.. bipolar 1, bipolar 2, rapid cycling bipolar, mixed bipolar, cyclothymic ... There are so many different illnesses in which are divided into many forms. Why on earth arent thdy doing this for CFS. Maybe this is something which needs to be pushed so we dont keep being left with stuffed up studies.

You can't subgroup something you don't know enough about. Subgrouping illness on a ubiquitous illness, and health, experience as 'fatigue' is ludicrous, yet this is what has been advocated for years.

 

[Cort]

That's no proof other tubes won't work of course, but it's another example for someone using heparin tubes, like Lombardi et al. and VIP Dx.

I wonder what would happen if you apply for benefits and say "I've never seen a doctor, i've been diagnosed via telephone".

They did not diagnose over the phone; they asked questions over the phone and then the possible CFS patients were seen in a clinic to determine if they had CFS.

 

[Cort]

I'm sure Frank ruscetti said xmrv can be found in plasma. Isn't that what Vernon ment about the tubes.

I think that's a good question about the plasma - who knows, maybe a key question?: I don't know that heparin or citrate make the difference regarding plasma. However, they looked at whole blood and PBMC's - not plasma as Ruscetti recommended.