From the 1st annual XMRV conference

[Mark]

Who was the smug guy that shut Mindy's brilliant points down? What is the deal with people really not wanting to face that defining the illness
is so important? It's like some irrational taboo or something. Why not just let her make her point?

Further reflection on that is that it does seem quite irrational that the very definition of what CFS actually is, is considered a political point that cannot be discussed.

Mindy was brilliant - the clearest and most straightforward voice in the room.

 

[August59]

I know someone probably answered this, but this thread is growing faster than I can read it.

Comment made about "Iron Curtain" in Europe having two distinctly different XMRV?

 

[Bob]

I'm still curious about why only the negative studies have been communicated (CC twitter). Does anyone has an explanation?

Possibly because the +ve studies haven't been published yet and so there is an embargo on them, whereas maybe no quality journals want to publish the -ve studies, so it doesn't matter if they get leaked?
Also, maybe because the -ve studies were the earlier ones, whereas the +ve are the very recent ones?

 

[Rita]

That's way cool Rita. I'm sure they talked to her while there and I'm looking forward to the study being published. Can you make sure to publish it???? Will it be in spanish?

Well, this is in another theard


http://www.elperiodico.com/es/notici...a/469776.shtml

A common virus detected 2 out of 3 patients with chronic fatigue
Researchers do not yet know its role in the syndrome
The institute IrsiCaixa advances in detection methods and in vitro study models
Tuesday, September 7, 2010

Recent studies have found that a human retrovirus called XMRV is present in 67% or even more, of patients suffering from chronic fatigue syndrome, a correlation which has created a hope for progress on possible treatments, although there are still numerous uncertainties . "We do not know if the virus is the cause or result of disease or replication site, nor the transmission process," the specialist assumes Juli Blanco, IrsiCaixa Institute, located in the Hospital Germans Trias i Pujol in Badalona.

The syndrome, characterized by severe fatigue cause, substantial loss of concentration and memory, spatial disorientation and restless sleep, among other problems, affects between 0.4% and 1% of world population. There is no effective medical treatment.

Using the experience gained in the study of HIV-AIDS virus, with which it shares some characteristics XMRV the IrsiCaixa has initiated a program to improve knowledge of retroviruses, isolated in samples from patients and improve diagnosis. "We advanced," says White, "in the immunological characterization of patients in different detection techniques and in various in vitro models that allow us to analyze the infection." The first results will be presented this month at a conference in Maryland (USA).

SIMILARITIES WITH HIV / The XMRV, discovered in 2006, is simpler than HIV, but it works in a similar way, since it uses the cell machinery to reproduce them by inserting their genetic material. Perhaps the XMRV is not solely responsible for the chronic fatigue syndrome, but a path.

The IrsiCaixa, with the support of the Fundaci La Caixa and the Department of Health, among other centers collaborating with the University of Nevada (Reno, USA), where an analysis showed that the retrovirus was present in that 67% of suffering from the disease. The results showed a surprising way-or not, since it also happens with HIV-who was also at 3.7% in healthy patients.

The "statistical correlation" has aroused the interest of a large number of laboratories, but most studies are still unable to confirm the presence of the virus, White recalls. This point becomes the viral origin of the syndrome in a highly controversial subject.

 

[ixchelkali]

Didn't somebody say that the director of the NIH (possibly the NCI, it was ambiguous) had stayed for lots of talks and had asked questions? That Frank Collins guy, possibly? It was one of the panelists, who was talking about the NIH & NCI and then said that the director, etc. but didn't say of which.

Yeah, Francis Collins not only did the opening remarks but stayed to hear some of the sessions. I think that's good news.

 

[Mark]

How naive of the chair to assume (and close the dicussion because of his belief) that there is nobody who WANTS to find a negative XMRV result! British and Dutch studies were clearly designed to protect reputations, jobs and prestige of the psychiatric CFS lobby, and I can think of more than one reason why the CDC didn't want to find XMRV either. Scientists can be so naive when it comes to the politics in their trade. Science isn't always self-correcting when politics and economics are involved.

Spot on Wasbeer. Vast majority of scientists absolutely hate politics. When accusations come in that other scientists have brought politics in to it, they close ranks: No scientist would do that! Inconceivable! They can't proceed with their job if they have to take that into account. It's complicated enough let alone if they can't trust each other! But then, of course, with that assumption it only takes one or two bad apples to poison the whole barrel...

ETA: However, I should make clear: that doesn't mean that all the negative studies themselves are the bad apples - that's very hard indeed to believe - but that any kind of misleading activity - intentional or not - can be responsible for this kind of confusion.

 

[julius]

But the sheer energy of the confrontation indicates that something very new and significant is taking place

How so? I'm not sure I get what you mean.

 

[Sasha]

I know someone probably answered this, but this thread is growing faster than I can read it.

Comment made about "Iron Curtain" in Europe having two distinctly different XMRV?

I thought it referred to actual mice who have one version of MLVs (?) in northern Europe and another strain in southern Europe. The researcher was wondering if the same might be true of the geographical distribution of MLVs in humans in Europe. I think!

 

[Mark]

Oncer again John Coffin came across as the smartest guy in the room. And I love him, but I hate hearing him talk because he says things will move along "quickly", like having an assay within the next year.

I don't want to hear about an assay in a year, I want to hear about a cure tomorrow.

Damn you John Coffin.

Like I say: yes he's absolutely great, he has the whole thing surrounded...but...an assay within the next year?...he said the same thing a year ago!!...

 

[FancyMyBlood]

Possibly because the +ve studies haven't been published yet and so there is an embargo on them, whereas maybe no quality journals want to publish the -ve studies, so it doesn't matter if they get leaked?
Also, maybe because the -ve studies were the earlier ones, whereas the +ve are the very recent ones?

That first explanation would be a great one, but based on the webcast I don't know if that's presumably. One guy was commenting about how well they were done (although there was a counter argument IIRC).
It could be the -ve ones are already under peer-review while the others are still in the 'finishing' fase, but I guess there are several explanations possible.

 

[ixchelkali]

I found the words underneath a bit confusing. It was when I read "appropriate trolls" written instead of "appropriate controls" that I stopped looking at them ...

Me, too, but that cracked me up!

 

[Sasha]

Spot on Wasbeer. Vast majority of scientists absolutely hate politics. When accusations come in that other scientists have brought politics in to it, they close ranks: No scientist would do that! Inconceivable! They can't proceed with their job if they have to take that into account. It's complicated enough let alone if they can't trust each other! But then, of course, with that assumption it only takes one or two bad apples to poison the whole barrel...

I don't think that we could really expect to hear any explosive politics going on during a worldwide video broadcast of a public meeting! That sort of stuff happens behind closed doors, when it happens at all. And sometimes it happens without being spoken; discredited scientists just don't get rehired, or invited to collaborate, or have their papers accepted.

I had the impression that the chair (Stoye?) was heading off any controversy very quickly in a way that he wouldn't have done if he hadn't already seen it during the previous day and a half of workshop. I think a lot will have been said behind the scenes.

 

[julius]

Yeah, there were a lot of sheepish, nervous grins between panel members. Some things went down during the workshop for sure.

 

[Mark]

I understand that for scientists, the name of their game is caution, replication, and ensuring they fully understand something before "jumping ahead" to treatment. I get that. What they don't get is that the name of our game is trial and error, anecdotes, and personally acceptable risks. It isn't ideal, but it's what we've got and it's how we live, and until we're presented with another option that's what we'll continue to do no matter what the scientists tell us. Don't like it? Then give us an alternative. We can't wait another decade or two for you to make up your minds.

Yes I get that...however Coffin's point is that this individual-based approach will never lead to anything that can be generalised or widely accepted. People can proceed with such approaches and maybe get better themselves...and pay a lot of money to do so...those that have a lot of money...but that approach will never lead to anything that can be used by everybody else, something that can be vallidated by science as a whole...without reliable data about what those patients are doing, which requires standardised quantitative assays, that work will be of no use to anyone but themselves...it may be the best or only option of the most sick and desperate, but focusing on that approach also slows everything down for the rest of the world...including huge numbers of people who are just as sick and desperate. Still, it's not a black and white question; again, it's like driving a car and trying to get the speed just right....and I worry that the whole thing is so unbalanced that the tensions between the two extremes just keep us constantly stuck in the same place...what happens when the money runs out and all the people with cancer and autism start shouting that they are having a tough time too and they want their funding back too, and start pulling in the other direction. Some kind of bizarre global push-me-pull-you impasse...

 

[Esther12]

I had the impression that the chair (Stoye?) was heading off any controversy very quickly in a way that he wouldn't have done if he hadn't already seen it during the previous day and a half of workshop. I think a lot will have been said behind the scenes.

I wonder if we'll hear about it on Mindy's blog.

Scientists need to realise that pretending their work has no political context doesn't free them from political considerations, it just makes it more likely that the political nature of their work will be poorly thought through.

Some new info from the broadcast:


Judy Mikovits has at least 50 XMRV +ve samples from the London area... and has confirmation of the test results from 3 different groups.

Judy Mikovits' new study is looking at the hypothesis that CFS has an underlying immune deficiency like HIV... "we are following, and have setup chips to look at, all different viruses" (i.e. HHV-6 etc.)

The blood working group has identified problems with collection and storage - they've decided that a processing protocol is needed.

I guessI was hoping for something that would do more to move on my understanding.

We already knew the UK WPI paper was positive.
Didn't Mikovits mention that theory in her web-cast from last Jan (appx)?
We've heard about the blood group examining the importance of collection and storage of samples.

It was nice to hear a bit more, but considering this was an XMRV conference I was hoping we'd get some more big news out of it.

 

[Rita]

I had the sensation that all this experts , except Judy, were most worried for the retrovirus itself
than for the people who has the XMRV in his body.They dont realize that his mission is to save lifes and not to protect his papers or studies.Clearly they are defending his reputation.

 

[Mark]

What they don't get is that the name of our game is trial and error, anecdotes, and personally acceptable risks.

That has been the name of our game when everybody is ignoring us and doesn't even believe there's a problem...but once it's accepted that there is something real, and we have a biomarker (which we still don't have agreed yet, of course), then the game changes and the usual channels are now finally available...

 

[Sasha]

It was nice to hear a bit more, but considering this was an XMRV conference I was hoping we'd get some more big news out of it.

Yes, me too - I thought they'd be sending out press releases right, left and centre but it sounds as though, as a conference, they're too confused to do that and that as individuals, they're waiting until they publish their studies.

Aargh!

Oh well, it's way past my bedtime. I'm off to bed. When I look at this thread tomorrow morning it's going to be a thousand posts long...

 

[leela]

It was nice to hear a bit more, but considering this was an XMRV conference I was hoping we'd get some more big news out of it.

well, this was just the q&A after all.. maybe there was something else that we'll hear of soon?

 

[julius]

I had the sensation that all this experts , except Judy, were most worried for the retrovirus itself
than for the people who has the XMRV in his body.They dont realize that his mission is to save lifes and not to protect his papers or studies.Clearly they are defending his reputation.

Understanding the virus is the best way for them to help us.