XMRV Buzz – The Buzz From Spain, Dr. Mikovits Branches Out

December 11, 2010

Posted by Cort Johnson

The Buzz From Spain – Cristina Montane relayed a report from Dr. Julia Blanco on the meeting. Dr. Blanco first noted the usual on XMRV: that the problematic methodologies being used impair detection, contamination could be possible for some results, the polytropic MLV findings and the need to assess anti-retroviral effectiveness.

((editorial) With regards to contamination effecting some findings ….with roughly the same percentage of positives in people with CFS and healthy controls showing up in Dr. Cheney’s patients and the London study and the reduced levels of positives in theVIP Dx results – it seems hard to believe that this statement applies to the WPI/VIP Dx findings. On the other hand it’s hard to understand how a small Research lab in Reno Nevada would be able to stump much bigger and presumably more sophisticated labs and there have been a bunch – from BSRI to the Koch Institute to the CDC’s HIV Labs…. XMRV remains a conundrum. The NCI’s request that researchers give details that usually don’t make it into their methods section suggests they believe the problem is more than not following the WPI’s techniques….We await Dr. Singh’s results in particular given the care she had given it… using a PCR technique that seems almost immune to contamination…with the same blood storage and sampling techniques used for both healthy controls…and its overlapping checks…and, of course her experience with these pathogens.)

Finding XMRV! – After a rather strange sounding statement which seemed to indicate that they were now stating their results: “Considering the evaluation of our data set in the context of the knowledge we have of other retrovirus, we can point out” they then noted that ” XMRV sequences can be found in patients with CFS but also in healthy donors or HIV+ patients. The copy numbers appear to be very low, and their pathogenic potential is unknown” which suggests, since no one to my knowledge has found XMRV in people with HIV, that they have looked at three groups; CFS, HIV positive and healthy controls and found XMRV in each of them – a big step forward. Simply finding XMRV is quite an accomplishment given all the zero/zero studies.

What we don’t know, of course, is what the prevalence was – an important issue! If its high in people with ME/CFS and low in health controls then we’ll another strong result. In any case they are finding XMRV and one wonders if the reason they are finding it has anything to do with Dr. Mikovits earlier trip to Spain reportedly coach a lab there on how to find the virus.

Very Rare – they also report that when they found XMRV they found it in low numbers, which, in a way is encouraging as well, since that is what we would expect.

Immune Findings - Dr. Blanco reported the Spanish researchers also found alterations in B, NK and T cells. Since NK cell dysfunction is basically expected in ME/CFS, the focus here might be on those B and T cells. Any unusual T-cell finding would be a significant development given the key, key role they play in the immune response. A B cell finding would be very interesting as well given that a small Norway study has found that Rituximab – a B-cell depleting monoclonal antibody – has been quite effective in some people with CFS. A paper on that with an interview with the study director, Dr. Olaf, will appear shortly on Phoenix Rising.

Dr. Judy Mikovits Speaks – on XMRV, ME/CFS, MS, Lyme Disease, Cancer…….(is that all???). – The WPI has kind of been playing it safe it seems…but no longer… Dr. Mikovits is going to broaden the discussion on XMRV just a little bit in Santa Rosa, Ca on Jan 17th when she talks on it’s relationship to MS, Lyme disease and presumably other types of cancer than prostate cancer….Early on we heard about XMRV’s possible relationship to autism and atypical MS and if this the report is correct Dr. Mikovits is going to open that discussion again. One wonders if a new paper is in the works (except we hear that Journals will not accept XMRV papers from the WPI until their findings have been completely validated).

The study of note with regard to ‘other diseases’ is, of course, the Singh autopsy study….which should tell us just where XMRV is found in the general population and should shed some light on its pathogenicity. If XMRV shows up in the brains of people with encephalopathy or in the breast tissues of people who died of breast cancer…..then it’s hard to imagine the wheels won’t really come off on XMRV research

…This interesting meeting will take place from 2-5 pm

9 comments

{ 9 comments… read them below or add one }

DM December 11, 2010 at 10:39 am

Where does anyone say that Dr. Julia Blanco thinks the polytropic variety could be a contaminant? She is referring to the possibility, she is not saying that is the case, and is not singling out polytopic MLV-related viruses.

And it’s not just the WPI that are having trouble publishing positive XMRV studies, we have all heard that several researchers are.

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Cort December 11, 2010 at 11:12 am

It says right in the beginning DM, where in her written report she says ‘contamination could be responsible for some results’. Since the positive results are either p MLV’s or XMRV its certainly possible she is referring to the p MLV results. Since the WPI was able to show a live virus – I would assume they would be last on the list.

Of course, publication is the preferred option but I think we can say that all the studies are appearing somewhere so at least we do have a handle on who is reporting positive results and who is reporting negative results. Thankfully the BWG report listed all the studies that had been reported at the Workshop whether they had been published or not.

What I have heard is that every study on XMRVl, positive or negative, is undergoing a tremendous amount of scrutiny. This I have been told has applied to the negative Huber report which apparently is finally going to be published shortly. Dr. Singh noted that in a hot button topic like XMRV every journal is going to be very careful because they do not want to publish a paper that is later proven to be incorrect. Given that I would guess that the positive studies, unfortunately, have a more uphill battle than the negative ones at this point.

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DM December 11, 2010 at 2:03 pm

She doesn’t say any such thing right at the beginning. It is your own assumption that she is referring to only one variety. It is only sensible to suggest it, even if she knows and believes that contamination is not the cause. I see you have now altered the article to deal with this point.

Studies have to be published, there is no preferred option. What is happening has nothing to do with science. The BWG does not report all studies, it only list those published and those presented at conferences. That is not the same as being published, and could never be. This is affecting the positive studies from everyone, and it started with Lo et al.

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Cort December 11, 2010 at 3:17 pm

Yes it is my assumption – agreed!
I agree that conference reports are the not the same as publishing. If you’re about only positive studies not getting published I can also give you a list of negative studies that have not been published including the Felsenstein and Joliceur studies as well as several negative studies reported at the Workshop. I know that’s not a popular opinion given the desire to see something malicious at work :).

With the regards to the Lo study I have disagree with you. The Lo study was published and it was positive. After being held back Lo/Alter did more work on it that ended up strengthening the study. The point is that nobody ended up holding back a positive result -which suggests to me that the conspiracy theory really has to fold at that point. The DHHS officials said they wanted more work done on it – more work was done on it – and the study was published.

It may very well be that Journals are looking harder at positive studies – that’s certainly possible. I think its certainly true that WPI associated studies will have the hardest time getting published until XMRV is validated.

But I don’t think that’s necessarily a conspiracy against CFS or the WPI; I think that’s just the way Journals operate when confronted with an issue like this – they want the science to become clearer before they take that step. The fact they know the BWG is trying to iron out some problems probably makes them hold off further, I would guess, until some resolution has come.

Hopefully we’ll get some of that in just a few days. If XMRV is validated and the WPI still can’t get it’s studies published – that would be a different situation. A journal next year will also publish results from the Workshop and other studies – if that journal doesn’t have a mix of positive and negative studies – that would, in my opinon, be a different situation as well.

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DM December 11, 2010 at 4:27 pm

Why would anyone be all about positive studies?

The political reasons for holding back the positive studies are not necessarily the same as the negative studies, as evidenced by Lo et al. In todays climate, all studies are eventually published, good, bad and ugly.

Lo et al. was held back by those at the top. It was the public and media attention that pressurised them into realising the results. As Coffin said, “its not the usual kind of thing”, i.e. it was out of the norm. If the leak had not revealed its existence, would it ever have achieved publication? Probably not without Alter and Lo speaking out. And let’s not forget that Lo did. Yes, they did a bit more work on the study, but not everything that was asked, because Lo and Alter knew it was wrong to keep back such an important study. Therefore there is no conspiracy theory, the evidence exists. That is not how science should ever be conducted.

It’s not XMRV being validated that is the issue. Nor, as I have already stated, is it only the WPI who are having difficulty getting published. It’s partly that journals are scared of being made to look foolish. Well, that’s not science. It either meets their standards or it doesn’t. No journal should pick and choose based on which way the wind is blowing. Logically there will also be pressure from the Government, the HHS, and insurance companies to bury it. That’s not a conspiracy theory either. What else would their priorities be other than money. And no they don’t plan for the long term. Eventually they will have to publish though, because the cries of foul will be far to loud to ignore. But that doesn’t make it right.

Claiming that anyone who speaks out is creating a conspiracy theory is unhelpful. It detracts from the issues, and is irrelevant. I have not claimed such a thing, and have provided evidence for the points raised. Better to stay away from that dead duck.

Finally, XMRV has already been stated to be a human retrovirus. The WPI found XMRV, therefore their findings of this retrovirus in the patients studied are sound. It is the question of if it accounts for a significant proportion of those patients, depending on the definition used, which is the issue. Validation will not come from one study. No matter what the HHS would like to claim. Lipkin by himself will not settle this. The association with prostate cancer is the same. There are still many who argue that link is still to be confirmed. But science never reaches its conclusions in single studies. It edges it’s way along.

Cort, I think you are guessing about studies being published. Everything is being played very quietly right now. Only a select few have access to this information. You are playing the odds when you state that a journal will publish results next year. Of course they will.

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Cort December 11, 2010 at 8:31 pm

It’s just not true that all studies are published. Journals are looking for advances in a particular field; thus they may not be interested in a study that simply disproves or approves a series of other studies.

Your idea that it was public attention that got the studies published is simply your idea. For me I think its much more likely that Alter and Lo are both significant figures who could have gotten their study in any number of publications if PNAS hadn’t worked out. That’s my idea :). I guess we’ll never know….

Whether its science or not, if Journals are being more careful with certain topics – that’s just the way it is.

I agree that one study will not settle this issue. It will take hopefully one study illuminating what has gone wrong in other studies – and showing the way – and then a raft of positive studies following. I know the WPI already showed the way…but apparently the way will have to ‘shown again’ for the research world to really get it and move on.

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DM December 12, 2010 at 4:30 am

Not all journals are not only looking to advance a field. They also have particular agendas to fulfil, like increasing readership or keeping their sponsors on side. And many are happy to publish anything, all you need do is throw money at them.

The pressure from the public and media to release Lo et al. is of course my own idea, which many would agree with. (Not my own idea – Others have agreed) But I never claimed it was anyone else’s idea. Unlike yourself, who did claim that Dr. Julia Blanco thinks the polytropic variety could be a contaminant, when she has never said such a thing. It is well known that decent researchers will want to get their important papers, which Lo et al. paper is, into more prestigious journals. It lends more credibility to the findings, due to the more rigorous review processes employed by such journals.

The way things are, does not make them right. The scientific process was never meant to work that way, and those running the journals and others in the scientific community, should hang their heads in shame for the delay in progress they are creating, no matter the outcome. I would of course argue that this process has never truly worked, as not all journals are in this to advance science, but eventually, and probably too late for many sick people, all studies will eventually be published.

Yes, studies will begin to push toward the truth, with some being stronger than others, but multiple papers is the key. It is possible to say that something has gone wrong in a study, but for many it is part of the discovery process to realise that a piece of their methodology would never work. Whereas others are fully aware of why certain process are incorrect, but I would think these individuals would know they had gone wrong. Their actions are therefore deliberate.

The WPIs Science paper has been backed up by Lo et al. We also know of several further studies, trying to get published, that also support their findings. It is also common knowledge that the WPI presented data at the Cold Springs Harbor conference, months before the results of Lo et al. were known, which showed that the WPI were finding X, P and another variety of MLV-realted retroviruses. Therefore the delay in funding further more extensive research studies and starting clinical trials is inexcusable.

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Adin December 12, 2010 at 12:07 pm

Where are open access journals in all this? While they don’t have the same authority as peer reviewed journals, this type of situation is the reason for their existence! (Supposedly to fix the very problem @DM is pointing out)

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empress_iii December 12, 2010 at 1:57 pm

At least four people have “assessed” antiretroviral effectiveness:

Dr Jamie Deckoff-Jones and her daughter Ali have improved to at least 80% KPS, in 9 months on AZT, Viread and Isentress.

Likewise, Dr Michael Snyderman, oncologist with CFS and lymphoma.

And Ms. “X” on Hope For FM and CFIDS blog, recovered to apparently 100% in 4 months on same.

Patients, especially doctors who have ME/CFS, are way ahead of foot dragging “scientists” and bloggers who are motivated by politics and money instead of progress in health care for patients.

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