XMRV Replication Studies

[Cort]

Here are the Replication studies I've been able to find. I'm sure there are quite a few more. Anybody know of more?

Status Pretty Sure

• The CDC's HIV division study involving WPI samples, Wichita/Georgia samples and hopefully samples from other CFS groups
• a large set of studies under the aegis of the Health and Human Services Working Working Group on XMRV in the US.
• a UK study involving Dr. Kerr and including samples from Dr. Enlander in the US* another UK study from the University College London - Target Date: Summer 2010
• a Swedish study - Target Date: Spring/Summer 2010
• Chris reported that Dr. Paul Jolicoeur, a retrovirologist at L'Institute de recherche attached to the University of Montreal in Montreal, is doing a study with 50 patients.

Status Unsure

• Dr. Shepard of the MEA reports four 'very good' research groups are 'very keen' to do followup studies and that money is not a problem
• Dr. Bell has the OK from Dr. Ruscetti at National Cancer Institute to send him newly gathered samples from his original pediatric cohort from Lyndonville to test. Dr. Bell is apparently trying to contact these people and get samples.
• Dr. Lloyd in Australia hoped to get one together to test his Dubbo patients but its unclear whether he did

__________________

 

[Cort]

Moved Everything from the other thread - got taken over my something else.

misskoji

--------------------------------------------------------------------------------

Wasn't Dr. Bell going to do one on his Lyndonville cohort?

misskoji


#3 Today, 01:50 PM
Katie


Hi Cort,

Thanks for organising the information for us, saves lots of scattered and disparate threads popping up all over the place.

I read of a Canadian study in one of the threads on here, I remember googling him, he's French Canadian. I'll try and find that thread.


Dipic

Yes.

Quote:
We have four projects listed and have begun working on them.

...

Project #3 is important. It is now 25 years since the outbreak in Lyndonville, and we are tracking down the 60 kids who got ill at that time to find out what has happened to them. The 15 year follow up study was published (Bell D, Jordan K, Robinson M. Thirteen-year follow-up of children and adolescents with chronic fatigue syndrome. Pediatrics 2001;107:994-8) 20% of the kids in that study were still sick, but what is happening now? We'll see.

Project #4 is perhaps the most important of all. Did XMRV cause this cluster outbreak? If so the 60 kids should have demonstrable exposure to XMRV. Does this virus cause some to stay sick? If so, we should find viral DNA and viral proteins showing replication in those still sick, but not in those who got well.

--------------------------------------------------------------------------------

 

[Cort]

Thanks I added Bell's. I heard him as Ruscetti if he would analyze his samples at the CFSAC meeting. So Ruscetti's going to do it. He sounded like he was happy to. So NCI's probably analyzing others as well (?)

 

[Cort]

Cort, there is also Dr. Paul Jolicoeur at L'Institute de recherche attached to the University of Montreal in Montreal; he is a retroviral specialist, and has advertised for 50 CFS patients to come forward--wish I were still in Montreal! Chris

 

[consuegra]

Enlander/Kerr

Dr. Enlander told me that the results from the trial of Kerr, to which he is sending samples, should be completed in nine months.

Chris

http://cfspatientadvocate.blogspot.com

 

[dsdmom]

why so long?

I'm just curious why it is going to take 9 months to gather results of studies? Is it because they don't have samples and need to get them? I would think if they had the samples ready the results would be available much sooner than that.

I'm just impatient I guess
But seriously trying to figure out why their timeframe is so long. Anybody care to fill me in?

 

[Recovery Soon]

I'm just curious why it is going to take 9 months to gather results of studies? Is it because they don't have samples and need to get them? I would think if they had the samples ready the results would be available much sooner than that.

I'm just impatient I guess
But seriously trying to figure out why their timeframe is so long. Anybody care to fill me in?

No idea. But I'm a subject in this study, and really want to know my results...AND if the findings replicate, of course.

Enlander is my doc- I didn't even know they were doing a study til I heard on the web and asked him about it. There didn't seem to be a rush to get samples that I could detect.

 

[Eric Johnson from I&I]

> just curious why it is going to take 9 months

I'm a little puzzled too. If you had infinite time, why not take forever. But it seems there is an incentive to be the first confirmer. You will seem a little bold, and people will be saying your name and reading your paper 5 times until the next one comes out say 40 days later.

 

[Cort]

The Swedish study will be out in Spring/Summer which is just a bit more quickly.

Kerr et al. are going to be behind the ball. Coffin said he believes they will have a validated assay/test in 6 months; that means all these different labs have built their own tests, documented them and then compared them and come up with the standard test in six months. Since that was a month he said that - hopefully five months. Kerr will then release a study with an assay that will probably be a little different.

On Oct 29th Dr. Miller said the CDC had already run 100 CFS samples. That was 5 weeks ago. Once they have that done how long can it take?

It may be the difference between a very active lab run by a prominent researcher and a CFS researchers lab with fewer resources.

 

[consuegra]

Enlander/Kerr

Dr. Enlander said that the study would take nine months. I did not ask him why it would take this amount of time. He mentioned at the NJCFS conference that he and Kerr had a grant to do this study and he invited participants from the audience. They are looking for samples. You can call his office and find out how to donate to this study. I do not think that participants get individual results.

Dr. Enlander has a small, loyal staff in his office. Dr. Kerr has a small, loyal staff in his lab. I do not think this grant is very large and Dr. Enlander mentioned that they were accepting patient payments for shipping to UK (not cheap) where possible. My presumption is that these two researchers have taken on this work because they want to know the answer, and because they know that no one else will do it. I believe they are going to test 500 patients and they have gathered over 100 samples so far. This is hard, time-consuming and expensive work. Of course, everyone wants results tomorrow. However, this is not an abstraction.

Chris

http://cfspatientadvocate.blogspot.com

 

[Recovery Soon]

Keep in mind, Dr. Enlander is running a robust practice while conducting this research, so most of his time is devoted to patients, and not the study, per se.

If you want to participate in the study, call the office at:

212-794-2000

 

[Cort]

So far I have a list of about 15 studies/groups working on XMRV.

http://aboutmecfs.org/Rsrch/XMRVStudies.aspx

 

[Megan]

Cort,

I have contacted Andrew Lloyd about his study. It is definitly confirmed and results will be released in January 2010.

Megan

 

[fresh_eyes]

I have contacted Andrew Lloyd about his study. It is definitly confirmed and results will be released in January 2010.

Hi Megan, thanks for posting. Wow, results already! That's great news. Can't wait.

 

[Kati]

Cort

Great job on the XMRV pages!!!

and replication results by January 2010, bring it on!

 

[gracenote]

another study

So far I have a list of about 15 studies/groups working on XMRV.

Here's another one that just started.

Investigators from the Panorama Research Institute (PRI), located in Sunnyvale, CA are developing a new test for Chronic Fatigue Syndrome (CFS) based on recent findings (Lombardi et al. Science 326:585-9.2009) of a potential association linking a murine retrovirus called XMRV (xenotropic murine retrovirus) to CFS. This is a research test. It seeks to confirm the presence of XMRV in biological samples from patients diagnosed with CFS.

Blood draws began yesterday. They are trying to develop a good commercial test and they are working with WPI on it. They will be retesting the same patients from a local medical clinic that have had their blood already sent to Mikovits so that a comparison can be made. The results from that earlier study are said to be complete but won't be divulged until January. That study included more than a hundred samples from the very sick (including non-CFS patients) to healthy controls. (I have no hint as to those results. Darn!)

 

[Kati]

replication researches

scientists sure know how to keep a secret
OK already we want to know...

 

[Eric Johnson from I&I]

> The results from that earlier study are said to be complete but won't be divulged until January.

I take it you mean Panorama's work done by them in their own labs is complete? If so, whatever their results are, they cant be totally negative, or why would they be going forward?

I am also very anxious to learn whether other patient series were also around 98% positive, because that is so suggestive that xmrv is causal.

 

[Robin]

I take it you mean Panorama's work done by them in their own labs is complete? If so, whatever their results are, they cant be totally negative, or why would they be going forward?

You mean by "going forward" publishing (or divulging)? Wouldn't negative results be just useful?

 

[starcycle]

I can't wait to start seeing these results. So far, the preliminary reports are seeming to support what was found in the original study, is that right? It's almost seeming too good to be true, like someone is going to pull the rug out any minute. I can't wait for the confirming results!!!!!