Dr. Enlander XMRV

[ladybugmandy]

hello. i just heard from the yahoo group CFSExperimental that all of Dr. Enlander's patients were negative for XMRV. I dont know if VIP used PCR and/or culture and/or serology for Enlander's samples.

i heard only one patient of Levine's tested positive...again, I don't know what kind of testing VIP did.


sue

 

[Cort]

That would be surprising! He must have told a patient that?

I hope that's one of those rumors that got it wrong....

 

[acer2000]

Where was this posted? Perhaps I am just not seeing it, but I can't find it among the messages in the past few days on CFSExperiemental. Can you post a link?

Nevermind:

http://health.groups.yahoo.com/group/CFSFMExperimental/message/130716

 

[Recovery Soon]

Dr. Enlander's samples were all part of Dr. Kerr's study - so those findings are only as valid as Kerr's techniques. We already know that Dr. Kerr found nothing in any sample, so this is not really news.

 

[Dr. Yes]

As I understand it, Dr. Levine sent all her samples to VIP, and only two (last I heard) were positive.

I didn't know Dr. Enlander sent samples out THAT early, but I too had only heard that he was sending them to Kerr.

 

[JayS]

The negative study Kerr was involved in stated up front that the samples came from 2 UK cohorts. And if any of the samples came from Dr. Enlander, wouldn't his name be on there somewhere? Unless this is anecdotal from people who paid WPI or Coop Diag, I don't believe this is accurate.

 

[Dr. Yes]

Yes JayS, if Enlander had contributed samples to Kerr's published XMRV study he would have been mentioned. I have only heard that he was going to work with Kerr on a future XMRV study (though now that Kerr has apparently pulled out of XMRV research, that doesn't look too likely!). That's why I was surprised at the mention of his patients already being tested. Perhaps these are patients who sent out for private testing (to which lab(s)?) and reported the results to him.. too indirectly anecdotal to take seriously at this point.

 

[julius]

Could this be what they are talking about?

"The white blood cell RNA. study withJonathan Kerr in London is now complete and has been submitted for publication. Results can be obtained from Dr Kerr, St Georges Hospital , London, England"

http://www.enlander.com/publications.html

 

[Recovery Soon]

The samples collected by Enlander were tested by Kerr. When I asked my results 2 weeks ago Dr. Enlander said he did not need to look because "XMRV was not found in any of the samples tested by Jonathan." Therefore I (and everyone else) tested negative. My assumption is that Enlander's samples are included in Kerr's study.

Either way, the Enlander results are only as valid as Kerr's techniques, as he is the one who tested them.

 

[_Kim_]

so i guess levine's samples were just cultured? no serology?

I was among Levine's negatives. I think she told me that she sent in 11 (I forget exactly, as this was a month ago) and only one came back positive. All of us were tested by VIPdx PCR and culture, not serology. I see her tomorrow. I'll ask if any more of her patients have tested positive.

 

[_Kim_]

As I understand it, Dr. Levine sent all her samples to VIP, and only two (last I heard) were positive.

I didn't know Dr. Enlander sent samples out THAT early, but I too had only heard that he was sending them to Kerr.

Yeah, Enlander was sending out samples as early as Nov. or Dec. Didn't Dr. Donnica and family say that they were in NY to get tested with Enlander? They might be part of the Kerr cohort as well.

 

[Nielk]

I was one of Dr. Enlander's patients who had my blood sample sent to Dr. Kerr's study.
Since all the samples that were sent from Dr. Enlander's office (per Dr. Enlander) came back negative,
I assume I am negative to XMRV.
Where would I post this result on the forum?

 

[Esther12]

I was one of Dr. Enlander's patients who had my blood sample sent to Dr. Kerr's study.
Since all the samples that were sent from Dr. Enlander's office (per Dr. Enlander) came back negative,
I assume I am negative to XMRV.
Where would I post this result on the forum?

The only polls were for the commercially available tests. Seeing as yours was part of a published study, I don't think there's any need to collect that data here too.


I'm a bit confused though - so the Kerr study was an international cohort? That wasn't mentioned at the time, was it?

 

[Nielk]

I don't know whether it was mentioned or not.
All I know is that Dr. Enlander collected samples from his patients to be sent to Dr. Kerr for his studies.
When I saw the results of Dr. Kerr's study I got in touch with Dr. Enlander and he said
that his patients were included in the study and they were all negative for XMRV.

 

[Dr. Yes]

from Esther12

I'm a bit confused though - so the Kerr study was an international cohort? That wasn't mentioned at the time, was it?

No it was not. The paper clearly explains where the samples were taken from, and all were from the UK. This is very puzzling. My only guess is that Kerr was testing American samples using the same methods simultaneously, perhaps for use in a future study.. but when he found only negatives he lost interest in XMRV altogether. But in this case I hope that Enlanders' patients were aware that they were being tested with a different protocol than that used in the Science study, and one which had not yet been known to find any positives, was in the research stages, and had not been validated in another lab (at least the WPI methodology worked in the NCI and Cleveland Clinic).

ETA - Just saw your post Nielk. Now I'm more confused. Or perhaps Enlander is?

 

[Dr. Yes]

I would assume that other "lab in the U.S." was Cooperative Diagnostics. Was there a single positive reported from them, even anecdotally?

 

[Nielk]

I am also very confused.
Was the methodoligy of testing done by Dr. Kerr's lab the same as the Whittemore?

 

[Dr. Yes]

Speaking of Enlander and XMRV...

Here's an interesting bit of timing:

http://www.forums.aboutmecfs.org/sh...nd-good-science-suggestions&p=55539#post55539

 

[oerganix]

I am also very confused.
Was the methodoligy of testing done by Dr. Kerr's lab the same as the Whittemore?

In a word: NO

See this thread and read all about it:
http://www.forums.aboutmecfs.org/showthread.php?3133-XMRV-CFS-UK-study-II

 

[Nielk]

In a word: NO

See this thread and read all about it:
http://www.forums.aboutmecfs.org/showthread.php?3133-XMRV-CFS-UK-study-II

Please forgive me, but I am a lay person and do not understand the difference.
Reading the thread, it seems to me that they followed the same protocol as Whittemore, but I guess I'm wrong?