XMRV Replication Studies

[fresh_eyes]

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

I took it as "going forward" with testing another round of samples.

 

[Eric Johnson from I&I]

^ By going forward I meant trying to develop a test -- Gracenote said they began getting blood yesterday.

Had they tested patients from the Mikovits paper in an earlier phase of their work, as described by Gracenote, and had negative results or few positive subjects, it seems they wouldnt be going on with another phase of their project.

 

[Eric Johnson from I&I]

> So far, the preliminary reports are seeming to support what was found in the original study, is that right?

It vaguely seems that way, unofficially. Except for the Koch-Institut in Berlin. They said on their website that they werent coming up with more than a subject or two with XMRV, out of many CFS subjects.

 

[gracenote]

let me try again

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!)

Okay, let me try again.

I am involved in 3 studies (2 for XMRV).

Study One: (non XMRV) was conducted in 2008. It was called Laboratory Data Collection in a Sample of Chronically Ill Patients and involved 35 CFS patients. This included numerous tests of blood, digestive, heart and other issues. It was funded privately and as far as I know the results were not published. It's purpose was to collect data and it was part of the Sonoma Working Group.

Study Two: These 35 patients were asked in mid-September if they would come in for another blood draw without being told why. Then the Science paper was published and it became clear that it was for XMRV. (This group was NOT part of the Science cohort.) The blood was sent to WPI. In addition to these patients, other non CFS patients and healthy controls were also tested adding up to over one hundred persons connected with this medical office. Today I was told, unofficially, that finally (finally!) the tests have been completed. (I've been waiting and waiting . . .) When I asked what the results were, this person said she HAD NOT ASKED! It's crazy busy before the holidays so . . . we get to wait.

Study Three: This is with Panorama Research Institute. They are working with WPI to develop a good PCR test for XMRV. They are retesting the patients from the earlier study (mentioned above, not the Science one) for XMRV so that they will be able to compare their results with WPI's. Testing began yesterday. I have no idea on their time frame.

Sorry I was so unclear at first. And sorry I don't have more specifics. I don't think anyone is trying to be difficult. This inquiring mind wants to know now, as I know all of yours do as well!

 

[Esther12]

> So far, the preliminary reports are seeming to support what was found in the original study, is that right?

It vaguely seems that way, unofficially. Except for the Koch-Institut in Berlin. They said on their website that they werent coming up with more than a subject or two with XMRV, out of many CFS subjects.

I've been searching for XMRV non-stop... and have only read about the German research results. I'd been assuming XMRV will only be a factor for a small number of CFS patients: what news have I missed?

From the scraps of rumours I'd found it seemed deeply uncertain to negative for CFS in general. Could anyone post some links? I clearly suck at google.

 

[Eric Johnson from I&I]

OK, so what you just heard was completed was not done by Panorama with their own hands, I take it.

Thats what is (would be) really of interest, different labs doing this by themselves with different hands. So far we have in addition to WPI, Cooperative Dx here in the states, and evidently at least one lab in western europe -- at least, thats what De Mierlier used according to rumor. I was hoping to hear he'd done it with his own hands. I'll be more comfortable when profs are coming out as well as firms. Probably just because I know how academia works, and I'm not familiar with industry. Also I'm not sure if the commercial labs will be publishing or not.

 

[Eric Johnson from I&I]

> I'd been assuming XMRV will only be a factor for a small number of CFS patients: what news have I missed?

Well, Mikovits et al have published only the 67% PCR positivity. But throwing in more assays, they found that 98% of CFSers were XMRV+ (unpublished, but it was presented publicly at the CFSAC meeting). So thats the news you are missing. If that is replicated it will strongly suggest that XMRV causes CFS. It could also be that CFS causes one to get XMRV, but at 98% that would be unprecedented and rather unlikely, though certainly possible.

 

[Esther12]

> I'd been assuming XMRV will only be a factor for a small number of CFS patients: what news have I missed?

Well, Mikovits et al have published only the 67% PCR positivity. But throwing in more assays, they found that 98% of CFSers were XMRV+ (unpublished, but it was presented publicly at the CFSAC meeting). So thats the news you are missing. If that is replicated it will strongly suggest that XMRV causes CFS. It could also be that CFS causes one to get XMRV, but at 98% that would be unprecedented and rather unlikely, though certainly possible.

Sorry, I should have been clearer. I know about the WPI stuff, it's the news of replication I've missed out on (other than the garbled translation of the German study). Are people hearing that the 98% is being replicated? From randomly selected CFS patients? Or did I just misunderstand the earlier comments? Thanks.

 

[Eric Johnson from I&I]

> Are people hearing that the 98% is being replicated?

Well, I sure havent. But some people seem to be more in the loop than I (I'm not in any loops at all).

What I heard is that most of Cheney's patients were positive. This doesnt mean much, though, if he used WPI and/or Cooperative Dx. Thats no slight at all to either of those two, of course, its just that we already know what results they get on this. But since Mierlier used a european lab, it seems at least two places besides WPI are finding stuff.

Of course, WPI's bigshot collaborators *already* found stuff in the first place, namely Cleveland Clinic and National Cancer Institute. As discussed in the paper. So I would tabulate two big shot labs, one start-up academic group (WPI), and two commercial labs finding stuff. The Koch-Institut, which I suspect is probably a big shot academic setup, not finding stuff.

 

[Esther12]

I see. I think I must have misunderstood an above post, and got over-excited. Thanks for clarifying. Hopefully we'l hear some more soon.

 

[gracenote]

not to worry about a negative test

It was mentioned to me today, when I went in to get my blood drawn for this new XMRV study, not to be concerned if either of my tests come back negative. I was told that we really need to wait for the antibody test which is how WPI found the additional positives after the Science study was submitted for publication.

I think that's all the info I have for now. I hope I haven't confused anyone further, including myself.

 

[Robin]

Thanks everyone for clarifying!

It was mentioned to me today, when I went in to get my blood drawn for this new XMRV study, not to be concerned if either of my tests come back negative. I was told that we really need to wait for the antibody test which is how WPI found the additional positives after the Science study was submitted for publication.

We don't know the percentage of unofficial positive antibody test results for healthies, do we?

 

[Eric Johnson from I&I]

Roughly zero in the paper -- thats actually official; it was published. But as I recall it was 0/7. A very small sample. So the true proportion could easily be 0/7, or 1/7, or 2/7. Maybe 3/7. It would be unlikely to be higher than that.

 

[garcia]

From section 5 of the Nancy Klimas talk:

The other thing disturbing on that other one was only half the people they looked at had antibodies, but they had the virus. So antibodies are probably not going to be our worlds best blood-test for this.

 

[Eric Johnson from I&I]

Mikovits told the press she now gets 95% seropositivity using a better assay. So it now looks like basically everyone does have antibody, if shes right.

 

[starcycle]

> I'd been assuming XMRV will only be a factor for a small number of CFS patients: what news have I missed?

Well, Mikovits et al have published only the 67% PCR positivity. But throwing in more assays, they found that 98% of CFSers were XMRV+ (unpublished, but it was presented publicly at the CFSAC meeting). So thats the news you are missing. If that is replicated it will strongly suggest that XMRV causes CFS. It could also be that CFS causes one to get XMRV, but at 98% that would be unprecedented and rather unlikely, though certainly possible.

More likely that the 3.7% who test positive but don't seem to have CFS/ME just don't have it *yet,* rather than the ~2% who seem to have CFS/ME but no XMRV just haven't contracted the virus yet! But yes, anything is possible!

 

[Cort]

Another study - good! Gracenote do you have a link to it anywhere?

 

[gracenote]

no links

Another study - good! Gracenote do you have a link to it anywhere?

All I have is from the "Chronic Fatigue Questionnaire" that I was asked to fill out when I had my blood drawn. This is their first paragraph.

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. This test has not been approved by the US FDA and is for INVESTIGATIONAL USE ONLY.

If I'm understanding it right, their purpose is to create a good commercial diagnostic test. They are working with Mikovits on it.

I just googled "Panorama Research Institute" xmrv and was led to my original post here on this thread (feels very weird ) and two other listings.

One of the others was pages and pages of single spaced listings of scientists? and their projects? I did not try to find the XMRV needle in this particular haystack as I value what little I have left of functioning brain cells.

The final listing was the following but when I selected it it said "this posting has expired." It would have been interesting to find this earlier.

Chronic Fatigue Syndrome volunteers
Nov 20, 2009 ... We have developed a new test for the XMRV. Seeking to evaluate, confirm presence of this ... Panorama Research Institute Sunnyvale, CA 94089 ...

And that's all she wrote . . .

 

[Cort]

Thanks - I did same thing - it was weird to see the post up there

Thanks for the info.

 

[usedtobeperkytina]

Isn't

Didn't I read that they only used blood from severely ill CFS patients? I mean, there are many people who have CFS and are not bedridden.

If I remember right, the reason was that if you are severely ill from a virus, likely that virus is very active. Therefore, they are more likely to find the virus in blood of people severely ill. It doesn't mean the others don't have it. Remember even the severely sick showed only 67% with active virus.

Plus, now, their tests are not reliable as a commercial, FDA test. I am not dogging them, evidently there is a different level of precision with commercial, FDA approved test compared to research tests.

Isn't it interesting that 4% of healthy people showed active virus. Peterson said he thinks there is another factor, likely another virus, that contributes to people developing CFS, oops, I mean XAND.

Tina