A Man From Whom Viruses Cant Hide

[Cort]

Gee, thanks Dr. Fauci.

An interesting article - but could they possibly have buried the stuff about the XMRV study a little deeper? The tone and context of the way it's discussed sends a clear signal: "There's probably nothing there, so it's good that this superstar is going to set this controversy to rest and end the discussion." Bleargh.

Buried it deeper? They gave a history of his work which lead up to his latest work which they called his biggest challenge or whatever.,..how is that burying? You are looking at this through very dark glasses. They've just given you evidence that maybe the best pathogen hunter in the world is studying a virus in CFS - and you're disappointed?

Should they ignore the negative findings - not mention them? That's not what newspapers do.

By the way, I interpreted Dr. Lipkin's statement "we have to keep an open mind about this' in a positive light - as in after all the negative studies we have to 'keep an open mind'. Dr. Vernon told me that Dr Lipkin has long believed CFS is caused by a virus and he's working with Dr. Montoya - one of our greatest supporters - to find viruses in CFS - and now some people are waiting for him to 'sweep XMRV under the table'!!!!! Arrgghhhh

I don't even know why that is considered a valid interpretation. Why not use the interpretation "oh good - they've given XMRV to someone's who's proved his ability to find hard to find viruses again and again plus he's working with one of the few researchers in the world who believes herpesviruses play a role in CFS - we can finally rest easy..". That is an equally valid interpretation of the events...but it does not seem to have taken hold .....'

I do get that there's no resting easy until XMRV is finally validated....but some at easeness could accrue from taking the above interpretation.

 

[Cort]

The amount of distrust is amazing to me...

Given that the scientific community is unclear about XMRV that I think we should thank our lucky stars that the NIH is giving this man the goal of finding it. They could have given it to Bill Switzer or somebody else like that....They could have given it to somebody you've never heard of - some minor guy in some NIH lab....or they could just allowed it to die.. Instead they gave it to a guy who does nothing but find rare viruses........that's all he does....he's at the top of his profession, he's developed new tools to find viruses .....he wants to find viruses - that's what he does. At the end you have to trust somebody.....

Lipkin isn't the only one, of course - Singh's in there too as well as the BWG and Smith Kline and others as we've discovered recently, but honestly if Dr. Lipkin can search through a hundred thousand gene sequences and find 14 that belonged to the virus that killed three women I think he can find XMRV. If he's discovered hundreds of new pathogens I think he can find just about any virus that anybody else can find. So, while Singh and other others will count - personally I think if Lipkin can find it it will be there and if he can't it probably - note that Fauci said 'probably' - won't be there.

I guess I'm coming from a very different place from lots of people.

With regards to Dr. DeMeileir and his little Redlabs - if he can find it - Dr. Lipkin can find it.......that's a no brainer for me. Put it this way...nobody is sending Reblabs samples from mysterious viral related illnesses from the across the world to the little Redlabs lab....If they can find he can find it.

 

[Cort]

I asked KDM about the negative studies and he said: "Look at us, we find XMRV in so many PWCs. We have the proof that it is there. A zero/zero study means that they are using wrong methodology."

If XMRV is not there and some labs still find it this would mean that there is a gigantic fraud going on which sooner or later will lead to the closing down of all the labs. Sounds not very likely to me.

Agreed. ......this is a scientific controversy not a conspiracy...

 

[Bob]

Many researchers have ruled out the vaccine-autism link by looking at the epidemiology of the disease. Dr. Lipkin decided to test the claim in a different way, by looking for the viruses themselves. Teaming up with some of Dr. Wakefield’s original collaborators, he found no difference in the levels of measles viruses in the intestines of autistic and normal children with gastrointestinal disorders.

http://www.nytimes.com/2010/11/23/science/23prof.html?ref=health

I didn't know that Lipkin had done this study on autistic children and the measles vaccine...
I'd be interested to know the difference in the levels of measles viruses in the intestines of autistic children compared with healthy controls without gastrointestinal disorders. And it would also be interesting to know the levels of autism in people who haven't had the measles vaccine, compared to those who have had the vaccine. I wonder if any governments publish these statistics.


I'm working through the thread and I've just read your post, pictureofhealth, and you've already covered what I was trying to say in this post...
It would be interesting to see the results of the study, to see if he did test healthy children, and children who hadn't received the vaccine.

And what's with this 'comparing findings of measles in gut samples of Autistic children', with 'finding measles in gut samples in normal children with other digestive disorders' - and then saying that this 'rules out measles as a cause of gut disorders'?!!!???? Eh????? How does he know that the measles virus didn't cause the gut disorders in the 'normal' children. Complete non sequitur.

If they found no measles in guts of healthy children (who had also had MMR vaccinations), that would have been a tad more convincing (tho' presumably scientists can't just wade in a take gut samples from healthy children), but not remotely conclusive.

 

[Bob]

My primary problem with the article was Fauci. To borrow from a post I just made regarding an article in today's WSJ (not just the health blog), statements like “If he can’t find it, it probably doesn’t exist.” do not seem very bright at this point in the game

I don't know much about Fauci, but if we were to interpret his quote optimistically, then it could simply mean that Lipkin will be able to find the virus because we already know that it does exist.

I think I read that the WPI will be involved in Lipkin's study, providing positive samples, and possibly actually being involved in the testing?
So I don't think there is cause for being overly concerned by this one article... The article was more a biography of Lipkin than an in-depth study of XMRV.

I tend to agree with Cort about this... I think people are panicking after reading the article, but if we take a step back for a moment, to look at the research that is actually being carried out by Lipkin and the Blood Working Group, then I think there is cause for optimism here.

In today's article by Amy Marcus, in the Wall Street Journal, someone is quoted as saying that the Blood Working Group is sending out positive samples to various labs... Well, they can't do that if the virus doesn't exist... So I hope that we should be expecting positive news from then when they finalise this phase of their study.

Amy Dockser Marcus - Wall Street Journal article

Seeking New Blood-Supply Test

http://online.wsj.com/article/SB100...729446.html?mod=googlenews_wsj&forumid=331851

Now that so many researchers have developed early versions of different tests, the next step is to see how they work outside a research setting. Dr. Busch says the federal blood working group is creating a set of positive and negative clinical samples that all labs can use, and has sent out blood to various labs to use as they fine-tune their tests.

The working group is developing a protocol that instructs labs on how to handle and process the blood, he says. For instance, discrepancies in the number of days that elapse between the time the blood is drawn and tested could make a difference in results, Dr. Busch says.

 

[urbantravels]

Buried it deeper? They gave a history of his work which lead up to his latest work which they called his biggest challenge or whatever.,..how is that burying? You are looking at this through very dark glasses. They've just given you evidence that maybe the best pathogen hunter in the world is studying a virus in CFS - and you're disappointed?

Yes, Cort, in journalistic style, the most important information goes at the top of an article and is called the "lede" (traditional journalistic spelling, like "graf" for paragraph.) The last paragraphs contain the least important information. It's called the "inverted pyramid" and is specifically designed to allow the article to be cut for length, because the last grafs are considered disposable. The assumption is also made that not all readers will read the whole thing. That's what I mean by "buried."

The decision on how to structure the article could also have been made at the editorial level - it may have originally been written to highlight the XMRV study more prominently, and the editor may have ordered a change based on the paper's overall policy about how much they can say during these days of "early science".

I find the burying odd, not merely because of my own bias that the XMRV research is the MOST IMPORTANT THING EVER, but because I don't really see what motivated the NYT to run a profile of Dr. Lipkin *at this particular time* other than the XMRV study. What else is he doing at this moment that is more potentially significant? It's like there is a huge subtext that the article doesn't even acknowledge. It's a little weird. My guess would be that it was an editorial decision to present the XMRV study that way - for now.

I posted elsewhere about how I don't really think this article is anything to worry about (in terms of signalling that some big coverup is brewing, which others seem to fear) but I'm confused now because we seem to have several threads on this article. Can we combine them?

 

[Cort]

I don't know much about Fauci, but if we were to interpret his quote optimistically, then it could simply mean that Lipkin will be able to find the virus because we already know that it does exist.

I think I read that the WPI will be involved in Lipkin's study, providing positive samples, and possibly actually being involved in the testing?
So I don't think there is cause for being overly concerned by this one article... The article was more a biography of Lipkin than an in-depth study of XMRV.

Yes the WPI is part of the study just as they've been a part of the BWG study....They are in there - they are not being isolated - they are being fully (so far as we can tell) included in the search. The BWG is addressing Dr. Mikovits concerns about sequence variability, etc. We haven't heard anything negative from Dr. Mikovits to be able to conclude otherwise.

Yes, it was a highlight piece on Dr. Lipkin - not on XMRV or CFS.

 

[Cort]

Yes, Cort, in journalistic style, the most important information goes at the top of an article and is called the "lede" (traditional journalistic spelling, like "graf" for paragraph.) The last paragraphs contain the least important information. It's called the "inverted pyramid" and is specifically designed to allow the article to be cut for length, because the last grafs are considered disposable. The assumption is also made that not all readers will read the whole thing. That's what I mean by "buried."

The decision on how to structure the article could also have been made at the editorial level - it may have originally been written to highlight the XMRV study more prominently, and the editor may have ordered a change based on the paper's overall policy about how much they can say during these days of "early science".

I find the burying odd, not merely because of my own bias that the XMRV research is the MOST IMPORTANT THING EVER, but because I don't really see what motivated the NYT to run a profile of Dr. Lipkin *at this particular time* other than the XMRV study. What else is he doing at this moment that is more potentially significant? It's like there is a huge subtext that the article doesn't even acknowledge. It's a little weird. My guess would be that it was an editorial decision to present the XMRV study that way - for now.

I posted elsewhere about how I don't really think this article is anything to worry about (in terms of signalling that some big coverup is brewing, which others seem to fear) but I'm confused now because we seem to have several threads on this article. Can we combine them?

I assume that you're correct about XMRV being the trigger for the article and thanks for filling on how these things are done.

 

[George]

For me the concern is the set up. That One man in one lab is going to answer all the questions and that he is the "authority", the buck stops here. I find this disingenuous on the part of the reporter and the part of the persons involved. If this was a puff piece and XMRV was simply included for the current event then why the quote from Fauci? Why leave the reader dangling on that one liner? "If it exists he'll find it". Based on the placement of the line that's what the reporter would want the reader to take away from the article. And if you are simply profiling a "great" researcher then why not simply talk about accomplishments? Dr. Lipkin certainly has a lot of them. Why insert the XMRV controversy and set Dr. Lipkin up to be the end all be all. Got to be a very uncomfortable place for Dr. Lipkin.

Yes the other labs are included in this study, CDC, NIH, FDA, WPI so again why write a piece that bills one guy, one lab as the definitive guide to a controversy that the public has no ideal even exits at this point???? The reporter Mr. Zimmer is way to good to have written this piece with this type of slant out of laziness or ineptitude. So the argument that it was taken out of context doesn't really work. Zimmer has a boat load of awards himself, he ain't no crank.

I don't think that XMRV is poised to be "swept under the rug". My personal problem is the XMRV is being "handled", and poorly in my personal opinion. (all those personals are important, it's just my take and everybody's is different, just expressing views here folks, grins)

IF and these are all IF's, IF XMRV produces a protein that codes for inflammation that makes tumors more aggressive then a lot cancer research groups need to be in on this, IF this virus produces proteins that cause vascular stretching (makes your blood vessels leak) then cardiologist, neurologist and digestive doctors are going to need some continuing education. (big grins) And IF it turns out that ME/CFS is the well spring of this virus, the ground zero, (ha we had it first!) Then the more the NIH tries to "handle" the distribution of the information the more people they are going to piss off. Know what I mean? If you don't want to look like you are being obstructing in the long run then don't be obstructing in the short term.

The NIH would do better to make short releases or allow papers to be published. By my last count there are some 30 papers that have never been published in a public format, although they have been discussed among the research community as fact. The breast cancer study was completed well before October 2009, the women' sexual organ study was started last March and completed in June of 2009, even the fact that the additional monkeys have been infected and used as a control for viral studies.

That upsets me. I understand that we are greatly honored to be studied by such a wonderful doctor as Ian Lipkin, and I am truly grateful that NIH has so honored me. (sorry snarky moment, I'm over it now) If the public is allowed to follow along with the research, a little info here and a little info there then people who have reason to follow the research will and those who don't won't and the public get's introduced a littttttttllllllle at a time. They have time to get used to the possibility of a new retrovirus. Instead the way things have been "handled" a flood is going to come down a produce a potential panic (for as long as it takes for the next ap to come out) and it didn't have to work that way. Bottling thing up just creates a flood later. That's all I'm sayin' ya know.

 

[alex3619]

Hi everyone, we shouldn't put all our hopes on Lipkin. However, if you wanted to put someone on the case, would you put some "who was that again?" researcher from a small CDC lab on the case, or would you put a viral hunter superstar on the case? I know who I would prefer. Sure there is a risk that he wont find it - but if we are really afraid of risk we should stop all research now, that way we can't be disappointed. I think it likely that in the improbable case he can't find XMRV, then he may find something else even more interesting - just look at his record.

Bye,
Alex

ps or in other terms, if you had a choice of James Bond or a green recruit to the CIA, who would you prefer?

 

[Bob]

Yes the WPI is part of the study just as they've been a part of the BWG study....They are in there - they are not being isolated - they are being fully (so far as we can tell) included in the search. The BWG is addressing Dr. Mikovits concerns about sequence variability, etc. We haven't heard anything negative from Dr. Mikovits to be able to conclude otherwise.

Yes, the fact that Judy Mikovits has been very quiet about the BWG makes me feel confident... Judy tends to cause a bit of a stir when she feels like she is being backed into a corner, or her research is being blocked by vested interests... She's not one to keep quiet.

It's interesting that they are dealing with virus variability... This does not seem like a virus story that is being swept under the carpet, but one that is becoming more and more advanced and sophisticated... The BWG just seem to be unable to tell the public yet, for whatever reason... I think it's probably because it is all taking much longer than they thought it would, because it's far more complex than they originally thought... There are so many variables and unknowns to deal with... For example, there's multiple XMRV's and at least one type of PMRV, along with the unanswered question about where PMRV fits into the puzzle, not to mention all the obvious questions about methodology.

 

[Bob]

For me the concern is the set up. That One man in one lab is going to answer all the questions and that he is the "authority", the buck stops here. I find this disingenuous on the part of the reporter and the part of the persons involved. If this was a puff piece and XMRV was simply included for the current event then why the quote from Fauci? Why leave the reader dangling on that one liner? "If it exists he'll find it". Based on the placement of the line that's what the reporter would want the reader to take away from the article. And if you are simply profiling a "great" researcher then why not simply talk about accomplishments? Dr. Lipkin certainly has a lot of them. Why insert the XMRV controversy and set Dr. Lipkin up to be the end all be all. Got to be a very uncomfortable place for Dr. Lipkin.

Hi George,
I think what gives me most hope is the details of the BWG work, and Lipkins proposed work...
If you read about the details of the work they are carrying out, and see how the WPI are playing a central role in both studies, then as long as the WPI can continue to detect XMRV in Cheney's and Bell's ME patients, then the study will be declared a success (I can't remember if this applies to Lipkin's study or the BWG, or both - I'll have to dig out the details.)
I'll have a look to see if I can find the details, because it might help ease people's worries about this subject.
Bob

 

[Cort]

For me the concern is the set up. That One man in one lab is going to answer all the questions and that he is the "authority", the buck stops here. I find this disingenuous on the part of the reporter and the part of the persons involved. If this was a puff piece and XMRV was simply included for the current event then why the quote from Fauci? Why leave the reader dangling on that one liner? "If it exists he'll find it". Based on the placement of the line that's what the reporter would want the reader to take away from the article. And if you are simply profiling a "great" researcher then why not simply talk about accomplishments? Dr. Lipkin certainly has a lot of them. Why insert the XMRV controversy and set Dr. Lipkin up to be the end all be all. Got to be a very uncomfortable place for Dr. Lipkin.

Yes the other labs are included in this study, CDC, NIH, FDA, WPI so again why write a piece that bills one guy, one lab as the definitive guide to a controversy that the public has no ideal even exits at this point???? The reporter Mr. Zimmer is way to good to have written this piece with this type of slant out of laziness or ineptitude. So the argument that it was taken out of context doesn't really work. Zimmer has a boat load of awards himself, he ain't no crank.

.

I think we should get that this is a reporter doing a piece, and trying as reporters all do, to create a compelling story - which has to have a slant. The storyline in this case was:

Ace pathogen hunter - discovers all these new viruses - debunks one virus claim - is now on his greatest case of all; is XMRV in CFS?

After doing all this writing I can see that pretty clearly Why focus on Lipkin? Because personalities make a compelling story - so reporters always focus on one if they can.

Although this is all we as patients see, because Lipkin is not talking with us - altho he is with other interested parties - his work is getting reviewed in the context of a media article - the bane of researchers all around the world. Would Lipkin have said this study was the end all? Of course not - simply because a responsible researcher would not say that. Even Fauci didn't say that.

We should focus, I think, on the fact that Lipkin is collaborating with the WPI and the NIH/FDA lab that found pMLV's. He is not doing this alone - he is doing it in conjunction with those labs; neither of which would have signed onto this if they thought something was fishy.

I know worry is in our genes by now so to speak but I honestly don't think we have to worry. This is a big deal for his lab - a very high profile case - he is really compelled to do it right and to get the right answer. Just imagine if he comes out with one finding and another ends up being true....a horror for his reputation - an absolute horror.

So while I know there is no end to worry until a conclusion about XMRV is reached I, at least, feel very good about the direction of the research....particularly with the good Singh news.

 

[Otis]

Bob,

I think collecting what do DO know about the Lipkin study would be helpful because I've seen bits and pieces but mostly without references, etc.

 

[George]

Huh, so as long as I'm the good little cheerleader all is well, but the minute I express a negative opinion on something you're going to do my research for me and show me how wrong I am?

You guys missed my point as well, the point was that by holding the information up then the public gets the entire thing dumped on them. The possibility of negative or panicky reaction is higher when you "spring" things on people. Letting information out over time so that the public becomes aware over time allows for the public to get used to the ideal. Wrong spin is what I'm saying. You guys totally missed the end of the statement.

 

[Bob]

Huh, so as long as I'm the good little cheerleader all is well, but the minute I express a negative opinion on something you're going to do my research for me and show me how wrong I am?

George, I always love reading your posts... I'm very sorry if I've offended you in any way.

I was addressing my comments, about Lipkin's and the BWG's research, to the forum as a whole.

 

[jenbooks]

Rather than second guess Carl Zimmer, go on his blog or FB page and ask him outright. This below is not fair. If I were him, I'd like to speak for myself about my reporting.

I think this reporter, though otherwise an excellent reporter (I've enjoyed his articles in the past) has slanted the mention of the XMRV study in a particular way that is making it seem soft-pedaled, and I would bet folding money that it was soft-pedaled because both Dr. Lipkin and Dr. Fauci were very tight-lipped about it and did not provide lots of detail or encourage him to highlight the topic. (And it's also quite possible that the Fauci comment at the very end was taken out of context.) I have also detected a certain editorial approach to the XMRV stories in the New York Times that is soft-pedaling and extremely cautious.

By contrast, the Wall Street Journal hasn't been shy at all about letting Amy Dockser Marcus' reporting appear with lots of detail - none of it has been inaccurate or exaggerated - but she apparently has close access to a lot of the big players and also good contacts in the pharma industry. The NYT is interested in being the "paper of record" and is thus fairly conservative in what they will report, whereas the WSJ is interested in giving early and accurate information to investors and those with a business interest in the subject. I think this accounts for a lot of the difference - but it's mostly to the credit of Amy for having a personal interest in rare and neglected diseases, a good understanding of the science involved, and a great ability to explain things in terms that are comprehensible to the educated layman. She seems to have some extraordinary access to good sources, too, which she has no doubt earned by her great coverage.

I don't think the choice of words in the NYT article is any reason to panic. Remember that everything you are seeing there has passed through a particular journalistic and editorial filter, and also consider the overall state of play with everything else we are hearing. If anything, the NYT article is a very positive addition to the discussion, but that positivity will only really pay off later on, when Lipkin has results to announce.

 

[Otis]

Huh, so as long as I'm the good little cheerleader all is well, but the minute I express a negative opinion on something you're going to do my research for me and show me how wrong I am?

You guys missed my point as well, the point was that by holding the information up then the public gets the entire thing dumped on them. The possibility of negative or panicky reaction is higher when you "spring" things on people. Letting information out over time so that the public becomes aware over time allows for the public to get used to the ideal. Wrong spin is what I'm saying. You guys totally missed the end of the statement.

I'm with ya George, although I'm feeling a bit more optomistic today due to the flood of information in the Singh patent. I'm actually more worried about that publication count. 30?

 

[jenbooks]

Nobody ever told *me* about an inverted pyramid, I never taught inverted pyramids, no editor ever never cut at the end nor told me to put the least important stuff at the end. *Ever.* I don't know who teaches that stuff.

This is a profile.

How can you start out with XMRV. That's a news story.

This is a profile. It outlines the man and his work, his amazing breakthroughs, and leads up to his most recent challenge--XMRV.

Oi.

Yes, Cort, in journalistic style, the most important information goes at the top of an article and is called the "lede" (traditional journalistic spelling, like "graf" for paragraph.) The last paragraphs contain the least important information. It's called the "inverted pyramid" and is specifically designed to allow the article to be cut for length, because the last grafs are considered disposable. The assumption is also made that not all readers will read the whole thing. That's what I mean by "buried."

The decision on how to structure the article could also have been made at the editorial level - it may have originally been written to highlight the XMRV study more prominently, and the editor may have ordered a change based on the paper's overall policy about how much they can say during these days of "early science".

I find the burying odd, not merely because of my own bias that the XMRV research is the MOST IMPORTANT THING EVER, but because I don't really see what motivated the NYT to run a profile of Dr. Lipkin *at this particular time* other than the XMRV study. What else is he doing at this moment that is more potentially significant? It's like there is a huge subtext that the article doesn't even acknowledge. It's a little weird. My guess would be that it was an editorial decision to present the XMRV study that way - for now.

I posted elsewhere about how I don't really think this article is anything to worry about (in terms of signalling that some big coverup is brewing, which others seem to fear) but I'm confused now because we seem to have several threads on this article. Can we combine them?

 

[George]

George, I always love reading your posts... I'm very sorry if I've offended you.

Bob, it's all good, don't sweat it. (grins) and thank you for the "sorrys" that's really sweet. (Licks and wags)

I do have a negative opionion of how the NIH is dealing with this. It's just shades of stupidity all over again (HIV) but the practice has made the people in charge of spin much better at it this time around. But I'm very positive about XMRV and what it means to the ME/CFS community. It may be important in the next year or so for the ME/CFS community to band together and push and to get other groups that are infected to push with us. The breast cancer study was never published. I have a small mass in my left breast. My doctor tells me it is nothing to worry about. If XMRV is pro-inflammatory and the mass becomes an aggressive tumor my doctor will have no clue to even look in that direction. He has no clue right now and I have nothing to "show" him to help him along the way. So yeah, I'm a little pissed about the way things are being handled. (growls)