Dr Enlander Proposes Large Multi-lab Study

[Recovery Soon]

Dr. Enlander is my physician. If anyone is open-minded to any solutions, it's him.

I'm sure anyone here could come up with a million research studies they'd like to see. But it seems pretty clear, the one being proposed on this thread is meant to get at the truth behind the discrepant results to date. If WPI has superior methods this study will reveal that.

Sometimes, I think we are so occupied with the politics that we over-analyze.

This would be a great study if all signed on, and would clarify the issues which occupy countless threads on the forum.

That's a good thing.

 

[citybug]

Maybe Dr. Enlander would be open to other labs like WPI, Kerr, ARUP, Emory, de Meirleir . It would be good to know which Dr. Klimas tried or to contact labs and see if they are test ready.

 

[garcia]

Question to Dr Enlander: Why hasn't JK tested the samples you have sent him??

 

[usedtobeperkytina]

I think at this time, the switching of samples is only useful if they are testing the WPI samples using the same method. Until someone else gets a recognized reliable test, then there is no point in them switching samples among themselves, in my opinion.

That said, I think maybe Cort meant no one has been able to find it definitively in CFS samples, besides WPI / NCI, CC. Remember, Ingh and the Japanese have found it in blood. And some Germans found it in saliva. But they weren't looking at CFs samples.

GSK and possibly the blood task force / Emory group (very large group of labs) are looking at CFS samples.

I think Klimas' samples are being looked at and also some of the Light study samples.

So, we ought to have some answers soon. But I don't know what good those results will be without a test that everyone recognizes as reliable. Whether the test shows it in CFS folks or shows it isn't there, the claim will be that the testing method was flawed or there was contamination. I guess that is why they like antibody test, cutting down on the contamination question. Of course, it has its own issues.

Either way, number one, I think, is getting the blood study folks, including the Emory folks, you know - the one Jerry Holmberg spoke about that had some international labs want to be included - to get the answer as to reliable testing method.

Tinathat happens, then we can check

 

[Cort]

has

Hi Cort, Yes i dont think the Dutch group or imperial college could go as far as to falsify the tests, But certainly wouldnt put it past them to want to do there own standardized testing, Producing results that we have seen already. So unless a standardized test was used by all, that has been shown to be the most reliable. I certainly wouldnt trust there methods. and by default there intentions. I must admit i get parenoid about these phsychiatric groups, probably irrationally so. But after seeing the likes of Wessley seem to pick and choose certain types of evidence to back up there viewpoint. I find it hard to trust them full stop. I know many others feel the same

I think i would trust them with a agreed reliable standardized test, But then again. Just felt a twinge when i said that, here comes the parenoid feeling again. Actually just the thought of them being involved bothers the hell out of me, More irrational thoughts. Its not easy when i know he ( Wessley ) probably ignored 90% of what i was telling him, as a very sick young man. And focussed on the leading questions

Do you cry, Ahh there you go, your just depessed. No Simon i cry because i know how ill im going to get when the symptoms start with a temperature. Sorry i didnt hear you what was that, I SAID TEMPE----------- Sorry the sessions over we will have to re book. Its hard to trust this Guy Cort and others like him. Irrational and parenoid comes easy with imperial college. Although i understand Wessley wouldnt be doing the testing, just hes prescence around those that would be bothers me,
Im glad Dr enlander is thinking along these lines Cort. But i really dont think if theres a chance this mess will get sorted, ( especially if the odds are in favour of xmrv being found ) that they will do the study. Again especially as whats happend since the science paper was published, with all the negative studys, Must suit them just to stay out of it now, and wait and see if Judy M sinks or swims

I agree. There's no problem being paranoid! Dr. Wessely is the last person that should be doing these tests given his background - thankfully there are others and that study will certainly not be determinatve.

Thus far we've had a couple of really problematic groups of researchers looking for XM RV (Wessely, Kuppeveld) groups of not-problematic researchers looking for it (Groom/Kerr/Gow, Huber, Joliceur).

Hopefully somebody will come up with something that everybody can agree on. That as, you note, is the key. I imagine that it'll be the DHHS - since Dr. Mikovits is overseeing that study.

I would be surprised if McClure and Kerr agreed as well.

 

[KnightofZERO]

Dr. Enlander sent that to me as an e-mail. I agree that the choice of the labs is somewhat problematic. I think he chose most of them because they had already published studies. It would be more interesting to me if you sent the samples to ARUP or Emory or Gallo's lab. I don't think anybody thinks the retro-virologists associated with the psych groups would falsify their results; that would up making them look like idiots in the long run, but having the best retrovirologists in the world involved would, of course, be very helpful.

I don't know if he's received promises from those groups to do the study. The biggest problem for me is that, outside of the WPI, nobody's been able to find any XMRV - so we don't know if anybody can find it anyway. I imagine this study would definitively demonstrate that the problem is in the labs not in the types of patients each one is studying; I imagine that the WPI would be able to find it in substantial numbers of patients and nobody else would. This study, at least, would clear that lingering question up.

Definitely agree with Parvofighter and Cort on this one. Kudos to him. A great idea, but it could be made so much better if it didn't involve medical institutes with a Psychiatric Approach to M.E./CFS whatsoever....

(or those who run them)

I think its fine to let the coauthors on the negative studies (who are virologists) in Dr. Enlander's study, if they have a more sensitive assay now (otherwise the result will be the same). However why have the people with a Psychiatric Position on M.E./CFS participate at all, it's not even as if they are remotely necessary (since the samples aren't from them anyways)?

If you want to include some of the authors of the negative studies ask the virologists on the negative studies to collaborate directly with Enlander on testing his samples rather than using someone like Simon Wessely (et al) in some go-between capacity, or in any capacity at all (it would be superfluous and, at best, not harmful to the end results, at best)...

Also I wonder if he is planning to include tissue samples (what with all this talk of biobanks ) since it seems that in the chronic stage XMRV is most likely found in certain types of tissue (the Emory studies on chronically infected Macaques presented at the CROI) which differ from blood. I think Dr Judy Mikovits has said the reason blood has been used is that it is the cheapest way. However we have all these bio-banks now, let's put them to use!

Regarding collaborators, more specifically:Why not ask the German and French groups that have already published on XMRV and wouldn't have an axe to grind?

 

[Bob]

This proposal doesn't look good to me...

First of all, I had been led to believe that XMRV isn't easily found in frozen samples... that's what the CDC said anyway... they had to stop freezing their samples, which was their standard practise... So is it a great idea to use frozen samples?

Secondly, why would we want to replicate those failed negative studies? It seems ridiculous to ask the labs that have shown that they are incapable of finding XMRV, to use that same methodology to do another failed study.

The WPI would be undermined even more, and accused of contamination again because all the labs except the WPI will conclude that there is zero XMRV in the samples.


UPDATE:

hmm... maybe I'm being too cynical... I need to look at the proposals in more detail...

If they are proposing using predetermined control samples (i.e. the samples are already known to be +ve or -ve), then that would work in favour of the WPI, but the other labs wouldn't agree to it because it would make them look like idiots when they failed to detect any XMRV.

On the other hand, who would determine whether the samples were +ve in the first place? The WPI are the only people who can do this at the moment!

It's very confusing and befuddling... the devil is in the detail...

But I don't think that the labs would agree to this study anyway, because there would be too much egg flying around all over the place, and too many faces available for the egg to land on!

Dr Kerr is not doing any more XMRV work, and nor is McClure... and Wessely wouldn't want to be involved in a proper scientific study if there was a risk of it destroying his career.

So I can't really see this proposal going anywhere at all.

 

[free at last]

I wonder if all the concerns mentioned could be emaild to Dr Enlander for hes opinion ?

 

[Megan]

It sounds to me like we might be waiting a long time for a validated test that is broadly agreed.

In the meantime isn't it still meaningful if blinded samples of CCC defined CFS patients and healthy controls were sent to the WPI? So long as they can pick a significant difference between the CFS patients and the controls it would prove that its not contamination and that there is an association of XMRV and CFS. How would the naysayers explain the ability of the WPI to pick blinded CFS patients? I think that this is an important study to do regardless of what other labs are showing. What if the WPI test is picking up something 'XMRV-like' that finishes up being slightly different to XMRV? That would still be a really important finding and something we would not want to get lost in the rush to look at XMRV.

Of course like others I would like to see a validated XMRV test. But the above option seems relatively quick and cheap so I have trouble understanding why we have not seen the results of such a study already.

 

[firefly]

My hunch is that we won't need to wait that much longer. The five laboratory XMRV study overseen by the NIH and inlcuding the WPI and Nancy Klimas is well under way. I may be overly optimistic, but I think we'll have better data soon.