The real story about XMRV coming out today?

[currer]

No Esther, we should be guided by our instincts. Science is to a much greater extent than is admitted.

The science will become clearer in the next few days and hopefully (time and energy permitting) I will have caught up with it all.

When I was really ill, I thought for years I would die from this disease. Some helped me, some did not.

I can spot people with the truth in them.

 

[Bob]

... I've not yet seen any good reason as to why the WPI would not be able to distinguish between control and patient samples under the BWG trial just published.

I agree with you on this point Esther... I'm not convinced by the argument that VP62 assays would have miss-designated all the negative controls to such an extent... Although, it is possible.

But I need to wait until we hear from the WPI before I come to any conclusions... I think it might be too early to dismiss all the HGRV research that Judy has been doing...

 

[Esther12]

No Esther, we should be guided by our instincts.

I really disagree with this, and think that a lot of harm has been done to CFS patients by those who followed their instincts about us and tried to fit the evidence in around that. People's instincts are often rather unpleasant and distorted, and one of the reasons I value science is that (when done properly) it should allow us to strip away our own prejudices.

Science is often affected by the prior-beliefs of those involved - but this is a bad thing, and we should do all we can to fight against it, not embrace it.

(This is a rather off-topic philosophical debate though. People venerating their own instincts is a bit of a pet-peeve, so sorry if I come across as unduly abrasive).

 

[Bob]

currer, do you mean your instinct that your illness has a viral cause, or an instinct that WPI's work is valid, or an instinct that the WPI have ME patient's best interests at heart? You post wasn't clear.

 

[Jemal]

We should not let this spin out of control, please. There's more important stuff.

 

[Bob]

It is untrue that good scientists do not use intuition.

I think that instincts and ideas often lead scientists in certain directions, and can be a source of inspiration, but at the end of the day, we do need hard evidence.

 

[Bob]

Does anyone know when Judy is presenting, UK time?
And when any of the other studies are being presented?
I need to do some other things this afternoon.

 

[maddietod]

I thought that XMRV is only reliably diagnosed by tissue biopsy. Are people looking in blood because a blood draw is cheap and easy?

 

[Esther12]

I agree with you on this point Esther... I'm not convinced by the argument that VP62 assays would have miss-designated all the negative controls to such an extent... Although, it is possible.

But I need to wait until we hear from the WPI before I come to any conclusions... I think it might be too early to dismiss all the HGRV research that Judy has been doing...

I'd like to hear a more thorough response from the WPI too.

I thought that XMRV is only reliably diagnosed by tissue biopsy. Are people looking in blood because a blood draw is cheap and easy?

The initial Science study was on blood, and the BWG wanted to check to see if there was danger to the blood supply. I don't think anyone has done tissue biopsies on CFS patients for XMRV - but if the results from the Science paper don't hold up, we have no particular reason for believing that there would be any association.

 

[maddietod]

I thought that Dr. Kenny de Meirlier only diagnoses XMRV by tissue biopsy, believing that this virus hides out there. I might have misunderstood.

 

[Esther12]

I thought that Dr. Kenny de Meirlier only diagnoses XMRV by tissue biopsy, believing that this virus hides out there. I might have misunderstood.

I'd not heard that. I don't think there are any published studies on this, but it could be something he's doing.

 

[alex3619]

Hi, KDM has indeed been looking for XMRV in gut tissue biopsies, and finding it much more reliably according to several of his patients. At least 100 patients from Australia and an unknown number in Europe have been tested. I expect to hear something at the Ottawa conference (perhaps) but it will be released in time I think. Bye, Alex

 

[Daffodil]

yea but KDM uses the WPI XMRV test....isnt that test now invalid cuz of the negative studies? sorry not sure how this works

 

[Jemal]

yea but KDM uses the WPI XMRV test....isnt that test now invalid cuz of the negative studies? sorry not sure how this works

I just read a quote from Mikovits on Twitter that there will be no more XMRV testing (at least for now).

Mikovits: VIPdx lab will not continue to offer XMRV-testing because it haven't been shown to be reproducible in BloodWorkingGroup

 

[eric_s]

Mikovits: VIPdx lab will not continue to offer XMRV-testing because it haven't been shown to be reproducible in BloodWorkingGroup

I think that was the right thing to do. They didn't have much other choice though, i guess.

 

[asleep]

Now the WPI themselves have failed to replicate their own findings in the first independently blinded test of their methods. It's a refutation of the Science 2009 paper if ever there was one.

You keep repeating this while missing a crucial aspect: it matters entirely what is being blinded. What you get out can only be a reflection of what you put in, and blinding only ensures the integrity of this reflection.

If you have a mix of positives and negatives labelled as "negative" and a mix labelled as "positive," blinding won't magically guarantee that all these "negatives" are actually negative and all these "positives" are actually positive. Instead you would get a mixed bag much like the WPI did in the BWG. Confusion in, confusion out.

This is why this issue of pedigreed controls is absolutely critical. The BWG appears to have done nothing more to ensure negativity of controls than screening with VP62-based assays. Ironically, the mountain of negative (VP62-based) papers have shown that this is a very inadequate means of designating controls.

Simply calling something a negative control based on known insufficient testing is not scientifically sound.

 

[eric_s]

But weren't these negative controls healthy people? So there shouldn't be more than 10% positives in there. And weren't these subjects tested and found negative in earlier studies? Sorry, i know i could go back and read the paper, but maybe you can provide the answer faster. Also it casts some doubts that the same samples were not consistently found positive or negative.

But no problem, if the WPI believes this study was not sound, please, please, please repeat the experiment, but in way so that cheating is ruled out as far as possible, and i will be happy to accept the result.

 

[Esther12]

You keep repeating this while missing a crucial aspect: it matters entirely what is being blinded. What you get out can only be a reflection of what you put in, and blinding only ensures the integrity of this reflection.

If you have a mix of positives and negatives labelled as "negative" and a mix labelled as "positive," blinding won't magically guarantee that all these "negatives" are actually negative and all these "positives" are actually positive. Instead you would get a mixed bag much like the WPI did in the BWG. Confusion in, confusion out.

This is why this issue of pedigreed controls is absolutely critical. The BWG appears to have done nothing more to ensure negativity of controls than screening with VP62-based assays. Ironically, the mountain of negative (VP62-based) papers have shown that this is a very inadequate means of designating controls.

Simply calling something a negative control based on known insufficient testing is not scientifically sound.

But they were trying to find a test that was consistently valid. We still don't have one we can be confident in, and without that, it's impossible for us to say that any sample is truly 'negative'. That doesn't alter the fact that were the WPI's claims accurate they should have found significantly more positives from CFS samples than from the control samples. If a control sample coincidentally came from a healthy person with an HMRV/XMRV infection, then there should also be some agreement between the two labs detecting positives as to which controls were infected, and it seems that there was not.

With this sort of study, there will always be the possibility of a bizarre series of coincidences conspiring to give a misleading result. That could have happened here, but I don't think we should start with the assumption that it did. The Lipkin study is still on-going, so maybe that will turn things arround for XMRV, but right now, it doesn't look like we should have much confidence in the WPI's ability to distinguish between blood samples from CFS patients and healthy controls - without that, their Science paper from 2009 looks much less exciting.

edit - you got in there first eric.

 

[VillageLife]

Your right though,

if you compare the UK study to the BWG study - its confusing.

UK study i think was about 40/50 positive, 1/50 controls? and it was blinded with the ashford hospital in london having some kind of code untill the end when the data was cracked.

 

[Nielk]

Originally Posted by RustyJ

I am reluctant to say it but if you want to get a good analysis on this you will need to go to mecfsforums. Their analysis is spot on. You will also see there that Ecoclimber/JoshuaLevy gets a bit of pasting.

I think that a little knowledge is very dangerous.
At least people who are nor scientist, accept the fact that they do not exactly understand what's going on.
People with some scientific or medical back rounds think they know better- they think they know everything.
Real serious Scientist are not afraid to admit that there is confusion here. Because do not be mistaken no one knows the real inside scoop of what is really going on. One can speculate but, it won't get you anywhere.
We need to have patience to see all this played out.
That's the opinion of a lay person on PR so I'm sure you'll take it with a grain of salt.