Article: Who's In? and Who International XMRV Workshop

You can view the page at http://www.forums.aboutmecfs.org/content.php?192-Parsing-the-International-XMRV-Workshop

 

Cort, thanks for the article.

One question, what boundaries has she transgressed?

 

Interesting article. Thank you.

Please note that it is Mr. Switzer, not Dr. The CDC website shows that he is an MPH, which I assume is a Masters of Public Health

The 1st International Workshop on XMRV has amended their program to reflect his academic credentials.

While I welcome the CDC's presence at the conference, I find it intriguing that the conference did not invite someone who has been able to find XMRV to speak on Assay Development as well.

 

I find Mr. Switzer's lecture most disturbing. More so than the snub of Dr. Mikovits even.

 

I see them as both representing the ongoing problem with CFS research.

 

Dr. Mikovits has implied that some researchers that are searching for the virus do not want to find the virus and implied that they are incompetent. She announced that XMRV was found in autism, FM and atypical MS before publishing any material on that. She stated that XMRV was worse than HIV/AIDS in Africa. Basically she's stated things as fact that there is no published evidence for - something that we as laymen can do - but that the research community takes exception to. Dr. Racaniello made reference to the idea that the 'WPI thinks they are the only ones that knows how to do PCR' and Dr. Huber was reportedly very upset at the aspersions that were cast on some researchers in the field. Some people are upset.

We have talked about the subject of being very conservative with your statements given that the WPI is a new Institute that is in the limelight and that that fact probably does not make other researchers (with long track records) happy.

It's pretty clear that at least some of the things that Dr. Mikovits has said have hurt her. She should have been in that Workshop and she's not - and it's not, apparently, because of her science. Some of her supporters think its very unfair but whether that's fair or not is pretty immaterial at this point; it has happened - the big question, I think, is whether or not it continues to happen.

This is the first kind of blatant snub of the WPI. We also know they haven't gotten any grants. Is it because of Dr. Mikovits outspokenness? What role does CFS itself have to play in this? Are other factors in play??????? Will it continue? Hopefully not. Only time will tell.

 

This is my fear Cort. Will it continue? Sadly, I believe it will and this snub may have devastating consequences for many patients.

 

Fantastic summary Cort! In the long run the WPI will get their due I think. Annette is pretty savvy but Dr. Mikovits snub is her own doing and she'll learn and go on to be a better person for it. She good people to start with so learning the play of diplomacy will just make her all that more formatable.

 

I don't want to look like I am trying to pick your points apart, I just felt the line needed clarification and perhaps a rebuttal. Hope you don't mind, i know a lot of us forget what has happened, especially with so much happening.

Dr. Mikovits has implied that some researchers that are searching for the virus do not want to find the virus and implied that they are incompetent. She announced that XMRV was found in autism, FM and atypical MS before publishing any material on that. She stated that XMRV was worse than HIV/AIDS in Africa. Basically she's stated things as fact that there is no published evidence for - something that we as laymen can do - but that the research community takes exception to. Dr. Racaniello made reference to the idea that the 'WPI thinks they are the only ones that knows how to do PCR' and Dr. Huber was reportedly very upset at the aspersions that were cast on some researchers in the field. Some people are upset.

Vernon has said the same thing about people not wanting to find the virus. Granted she is not presenting at the conference, but it is true. I don't recall her specifically saying it was worse than Aids in Africa, that was a duff interview from the Chicago tribune. What did she state as fact? that they are finding XMRV in other disease, Huber & McClure and many others have done the same, talking about studies before publication. Rachaniello has his own interpretation of the situation and clearly does not realise why they have been using the wrong testing methodology, as evidenced by your recent interview with him. Other researchers were upset with them the minute the paper came out, and Huber is bound to be if she has messed up with her study.

I know rambling.

 

It's extremely depressing to learn that the research community is driven by rivalries, malice, who's in, who's out and other invisible social borders -- in other words, it's a lot like high school. I guess Mr. Switzer is the King of the the Prom.

 

It's extremely depressing to learn that the research community is driven by rivalries, malice, who's in, who's out and other invisible social borders -- in other words, it's a lot like high school. I guess Mr. Switzer is the King of the the Prom.

And the ME/CFS community is constantly set up to fail if we're expected to never step on their hyper-sensitive toes. Or, the ME/CFS community is like the really unpopular kids who don't understand the unwritten ROOLS of the SKOOL.

Except these are supposed to be neutral, ethical scientists, and people's lives are at stake.

We can't go on trying to 'fit in' with arbitrary social systems of which we have been excluded. We have to be less diffident. We really do.

 

I don't want to look like I am trying to pick your points apart, I just felt the line needed clarification and perhaps a rebuttal. Hope you don't mind, i know a lot of us forget what has happened, especially with so much happening.



Vernon has said the same thing about people not wanting to find the virus. Granted she is not presenting at the conference, but it is true. I don't recall her specifically saying it was worse than Aids in Africa, that was a duff interview from the Chicago tribune. What did she state as fact? that they are finding XMRV in other disease, Huber & McClure and many others have done the same, talking about studies before publication. Rachaniello has his own interpretation of the situation and clearly does not realise why they have been using the wrong testing methodology, as evidenced by your recent interview with him. Other researchers were upset with them the minute the paper came out, and Huber is bound to be if she has messed up with her study.

I know rambling.

No not rambling V. To the point and fairly made. When you think of the "1000% right " comment McCLure made against the Lombardi team. When you think of Wessely insinuating people critiquing him are 'psychotic' and 'obsessed with him'.

All this 'boundary upsetting' is confusing, woefully inconsistent and strawmanning.

 

Cort,

Thanks for having the courage and integrity to lay this out as you see it. I agree that the WPI and Dr. Mikovits deserve the lion's share of the credit and that it is a shame and a loss for the CFS community that she isn't going to be presenting. Ironically, the scientific community is extremely conservative (read - slow to change, even in the face of substantial evidence). Old paradigms have to be overturned no matter how half-baked (and the CDC's history with CFS is at best, half baked). Stepping out of line and engaging in advocacy will always get you a very strong slap on the wrist. And yes, it is always a lot like high school.

As for the conference, I suspect that Dr. Ruscetti is well aware of the Mr. Switzer's talk and something tells me that he is more than prepared to address the 'absence of evidence' claim with his own 'evidence of methodological differences' that account for the CDC's inability to detect XMRV. Mr. Switzer would do well to be very careful about what he claims he's incapable of finding. Unfounded assumptions could leave the CDC looking more than a bit inept while revealing a strong confirmation bias.

 

Cort, thanks for the article.

One question, what boundaries has she transgressed?

Accusing other researchers of fraud / deliberate scientific misconduct.

'''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''

"They skewed their experimental design in order to not find XMRV in the blood."

…...

"They paid to have their study published in the Public Library of Science, and it was then picked up by Science (magazine)," said Mikovits, who suspects insurance companies in the United Kingdom are behind attempts to sully the findings of the Reno study. [1]
'''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''''

[1] http://www.meassociation.org.uk/index.php?option=com_content&view=article&catid=30%3Anews&id=1141%3Areno-researchers-dispute-british-challenge-to-virus-discovery&Itemid=223

 

".....the CDC's history with CFS is at best, half baked)"

I think you are being way too generous! I'd put it at 0.1 baked.

 

There is representation there of those who are not biased against an XMRV connection.

I don't mind so much if they want to leave her out of the conference as far as speeches. She has gone beyond what normal researchers do, but I think she is well justified for some of it.

And I just don't get this "don't reveal until published" idea when it happens at conferences all the time. It's very elitist to say, "Can reveal it to us in a conferences, but can't tell the public."

Remember, there was a private XMRV meeting before WPI study was published. Lots of info revealed there.

Now, if they give out a Nobel Prize for this discovery and don't give it to her and her co-authors, I will throw out the yellow flag all over the place. "Foul!"

But, preventing her from speaking at a conference is not going to hurt scientific process. As long as it is balanced, with Coffin, Ruscetti, Klein, etc. No big deal to us, since we aren't even invited. As said, this is more about punishing for protocol violations then claiming scientific discovery is false.

Part of this may be peeing contest.

WPI was new kid on the block. And for WPI to be the new kid on the block and then make the winning touchdown at the next football game, the one that put them in the playoffs, has got to upset some egos. With all the girls (patients) swooning as the new kid walks by, surely the other players will forget it is a team effort and some squabbles are inevitable. They will be looking for something to say the new kid did wrong. Ignoring or not speaking to the new kid is minor. You might even expect some locker room brawls.

But they can't take away that the new kid made the touchdown that won the game.

Tina

 

And I just don't get this "don't reveal until published" idea when it happens at conferences all the time. It's very elitist to say, "Can reveal it to us in a conferences, but can't tell the public."

Remember, there was a private XMRV meeting before WPI study was published. Lots of info revealed there.

It's primarily about $$$, prestige and the journals but it's also about distinguishing un-reviewed claims from claims with at least a minimum of scrutiny. You can find a 'journal' to publish almost anything but the prestige of the journal matters as they are typically associated with the most rigorous review processes. Think my one Science article beats your three BJM articles.

The review process is lengthy and requires a significant investment of time and money. Authors with a reputation for prematurely releasing data that has been submitted for publication are essentially blacklisted as the journals can't tolerate undercutting the value of their very expensive institutional subscriptions with data that is 'old news' and already widely available.

Information is released in a measured manner at conferences with the proviso that it may change and ought not be considered final until publication. The reason for releasing anything at a professional conference is that it allows researchers doing work in a field to consider what is on the horizon as the grant application to published article process almost always takes years.

Also, I think that some of the frustration amongst patients is the feeling that while the WPI may have clouded things by acting as advocates, it was needed as large governmental agencies such as the CDC have had their own agenda and are far from neutral. I would agree. However, there is a somewhat subtle difference between having an agenda (the WPI had an agenda before the Science paper and that was not an issue, it was much needed and long overdue) and crossing the line into advocacy (see Cort's first entry).

 

It's primarily about $$$, prestige and the journals but it's also about distinguishing un-reviewed claims from claims with at least a minimum of scrutiny. You can find a 'journal' to publish almost anything but the prestige of the journal matters as they are typically associated with the most rigorous review processes. Think my one Science article beats your three BJM articles.

The review process is lengthy and requires a significant investment of time and money. Authors with a reputation for prematurely releasing data that has been submitted for publication are essentially blacklisted as the journals can't tolerate undercutting the value of their very expensive institutional subscriptions with data that is 'old news' and already widely available.

Information is released in a measured manner at conferences with the proviso that it may change and ought not be considered final until publication. The reason for releasing anything at a professional conference is that it allows researchers doing work in a field to consider what is on the horizon as the grant application to published article process almost always takes years.

Also, I think that some of the frustration amongst patients is the feeling that while the WPI may have clouded things by acting as advocates, it was needed as large governmental agencies such as the CDC have had their own agenda and are far from neutral. I would agree. However, there is a somewhat subtle difference between having an agenda (the WPI had an agenda before the Science paper and that was not an issue, it was much needed and long overdue) and crossing the line into advocacy (see Cort's first entry).

Nicely put, CBS. Clear, concise and much needed.

 

Fantastic summary Cort! In the long run the WPI will get their due I think. Annette is pretty savvy but Dr. Mikovits snub is her own doing and she'll learn and go on to be a better person for it. She's good people to start with so learning the play of diplomacy will just make her all that more formidable.

What George said.

Thanks Cort.

 

All and all its too bad. Dr. Mikovits has been outspoken at times but XMRV is her baby and we'd be nowhere without her and it. I was told that some of her supporters in the research world were just furious that these matters got in the way of her being able to address the science in that Forum. They felt that was really unwarranted.

It does make one wonder if Dr. Ruscetti, her former employer and her mentor, will be rather forceful in his presentation - as Shane suggested.

The discussion at this point in the process of figuring out XMRV is going to be intense - that's for sure. I was just told that a researcher from Spain was flying in.