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XMRV Article in Chicago Tribune and other papers

flex

Senior Member
Messages
304
Location
London area
Mithriel,

I think I remember now he said something along the lines of "the evidence is thin" when referring to the contamination/flaw issue. I am sure he voluntarily made this remark as a rebuke to the Dutch study or general ridiculous statements from mainly European "scientists". That's why I find it hard to believe he made that other statement in the way the article claims.

FLUSH!!! Boy this is a heavy newspaper.

Cort as you say you are fairly conservative towards this whole matter at the WPI. Infact If I may say so you are positively Margaret Thatcher about it, if that makes any sense to an American audience.
 

Cort

Phoenix Rising Founder
it's not fair
I disagree that Dr. Coffin is on our side. He has changed his position on XMRV radically since October. Someone "got to him" about this. He in turn has gotten to others. I suspect that Coffin was behind Huber changing her mind in London and revealing her XMRV study results. Fancy-dan academics do not want this rogue institute from the state of Nevada to be running anything. This current situation is intolerable to them. It does not fit in with their lofty notions of self-worth. The WPI needs help to survive. This small band of researchers are under severe attack and the larger forces, including some of "our own", want to put them out of business. They do not want some aggressive rogue scientist from nowhere in charge or anywhere near in charge. This is not fantasy. This is real life and it is not the first time that this kind of thing has been seen.

Chris

http://cfspatientadvocate.blogspot.com

I don't know; Coffin knew all about the WPI when he supported them and when he talked about the research at the CFSAC meeting. He knew they were a small organization, then - why would he change now?

I certainly agree, though, that no matter what happened the WPI - this small research Institute out in Nevada for God's sake - was always going to have trouble from the powers that be. How could there not be a good amount of professional jealousy directed at them and VIPDx? Some researchers must of blown a blood vessel when they saw them on Science (and get all that publicity). It's like a new guy showing up at school and snatching up the Class Princess - ouch! Researchers are not necessarily nice objective people. They can carry grudges like anyone else....

I agree that's gotta be a problem- I just don't know if Dr. Coffin is involved - he was pretty enthusiastic there at the beginning; it was really a big help having a retro virologist of his stature backing the finding. You may know better than me since you were there but I think of this as just a quote she took.
 

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
No, this article did not mention Reeves, the CDC, the 93.3. But it also didn't mention Peterson, Klimas, the many studies that show it is biological or the CDC survey that included people with anxiety or the UK treatment methods or many, many other things. It didn't mention that many doctors think it is depression and that others think it isn't. It focused on the current controversy concerning XMRV initial finding and the unusual approach Mikovits has taken after the publication of the study. It is fair in that Mikovits is given ample space in the article explaining her unusual actions. This is not a book, it is an article.

And good gosh, I am glad it doesn't mention the whole "many don't believe it" politics comments, for once.

Flex, I have to disagree with you. I think more likely, the reporter put three statements together that he did say as response to three different questions. Put together, they may have appeared to make him look doubtful, when looked at closely, he simply says it is an unknown and at this point, all is possible.

And the article did mention NCI and CC. In that, you are incorrect.

Please folks, don't attack this reporter. I can't say there isn't any bias in the article. There may be. There are a couple of mistakes. Were they just mistakes or do they come from an underlying bias? We don't know. I have read that she has had some controversy over previous articles. But she has also won awards for her reporting on medical things. We need allies in the news media. Commend her, first off for thinking the issue is important enough that she gave it her time. Thank her for including both sides of the issue. And educate her on the mistakes she made.

Tina
 

Cort

Phoenix Rising Founder
oh well
Mithriel,

I think I remember now he said something along the lines of "the evidence is thin" when referring to the contamination/flaw issue. I am sure he voluntarily made this remark as a rebuke to the Dutch study or general ridiculous statements from mainly European "scientists". That's why I find it hard to believe he made that other statement in the way the article claims.

FLUSH!!! Boy this is a heavy newspaper.

Cort as you say you are fairly conservative towards this whole matter at the WPI. Infact If I may say so you are positively Margaret Thatcher about it, if that makes any sense to an American audience.

I guess I am. I think about strategy, the WPI's tenuous standing in the research community because its such small, young Institute...and wish the PR had been different. Love the science - worried about the PR; oh well....
 

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
Well, the way I see it. The line is in the sand. Pumping up the volume of rhetoric just means WPI is very sure and very concerned about public health concern. They know what is at risk and they know the costs.

Careers will be made and lost on this. I say better to have this public debate to stir up interest than to have people whispering at conferences.

At some point, hopefully soon, we will know who is right and who is wrong. Maybe this summer?

Either way, folks, WPI found a human infectious retrovirus. No matter what, that can not be taken away from them. It will all work out in time.

Right now, we need attention. This article gives it to us.

As Cort says, just imagine the headline when Mikovits is shown to have been right?

Also, major discoveries have often had scientists scoffed or criticized and later found to be right.

One example is the polio vaccine. See this excerpt: Kollmer's attempt at developing a vaccine was based on a slightly different premise. His idea was to use live, but slightly weakened (attenuated) virus, again taken from the spinal cords of infected monkeys. The virus was attenuated by mixing it with various chemicals and refrigerating it for fourteen days. Paul (1971, p. 258) called the result a "veritable witches brew." Again, after trying his "vaccine" on a few monkeys, himself, his children, and twenty-two others, Kollmer was optimistic enough to distribute thousands of doses to physicians across the country. Unfortunately, the vaccine was not only ineffective, but was blamed for causing many cases of polio, some of which were fatal. In his remarks at a meeting of the Southern Branch of the American Public Health Association held in 1935, Kollmer is reported to have said, "Gentlemen, this is one time I wish the floor would open up and swallow me." (Paul, 1971, p. 260).

In spite of his failed attempts at vaccine development, Kollmer apparently managed to pick up the pieces and go on to a successful, if not distinguished, research career. This was not the case for Brodie. Unable to find an important research position, he died shortly after accepting a minor position in Michigan. "It is alleged that he took his own life" (Paul, 1971, p. 261). Thus, tragically, he did not live to see Salk's successful development of a polio vaccine based on his concept of using formalin inactivated virus. Even more tragically for the hundreds of thousands who contracted polio in the 1940's and 50's, the 1935 fiasco made the scientific community so gun shy that polio vaccine trials on human subjects were not attempted again for nearly twenty years.

These two guys stuck their heads out. Even giving their vaccine to others without medical protocol of testing. They made mistakes. And yes, some died. But in the end, they were right.


And ulcers: Remember this? In 1982, when H. pylori was discovered by Dr Marshall and Dr Warren, stress and lifestyle were considered the major causes of stomach and intestinal ulcers.

And notice these unorthodox methods: Dr Marshall proved that H. pylori caused gastic inflammation by deliberately infecting himself with the bacterium.

The Nobel citation praises the doctors for their tenacity, and willingness to challenge prevailing dogmas.


And Pellegra, thought to have been caused by germs, later to be found to be caused by niacin deficiencies. His belief, based on his own research, was not validated until a decade later. Notice his unorthodox methods: To prove this, Dr. Goldberger, his assistants and even his wife engaged in experiments called "filth parties." They injected themselves with blood or ingested the scabs, feces and body fluids of patients. None developed pellagra.

The list is long. Leaders make history, not those who take the safe, conservative approach. The world changes because someone does something different.

To be honest, what surprises me more is that researchers, who know this history, want to criticize those who take this approach.

Tina
 

kurt

Senior Member
Messages
1,186
Location
USA
Good points Tina. Note that in those examples you gave many years were required to get to the bottom of things. Anyway, it is interesting to see how XMRV is being viewed outside our CFS advocacy world. From a third-party perspective we are still in the early stages of building any type of consensus. And I suspect that line in the sand could shift either way several times over the coming months and years.

What perplexed me the most was that Coffin's about-face. We need more information about how and why his thinking has changed. I would not presume that this is due to fear of a single scientist from a small research institute. Mikovits has played in the big sand box before, they know her well enough. I think this shift goes deeper and there are things not being told to us yet.
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
What perplexed me the most was that Coffin's about-face. We need more information about how and why his thinking has changed.

Where is the evidence for "Coffin's about-face"? Are you concluding that from this one quote? Did I miss something?
 

natasa778

Senior Member
Messages
1,774
Anyway, it is interesting to see how XMRV is being viewed outside our CFS advocacy world.

I would not take this article as indicative of how XMRV is viewed by the outside world. Imo that is totally wrong. This article only represents how XMRV is viewed by one particular journalist and her editor (who may well have an agenda!).
 

serenity

Senior Member
Messages
571
Location
Austin
i'm concerned, i have a watch & wait attitude over all this - but when & if XMRV turns out to be it, statements like "we will be like HIV Africa only worse" dont' really seem to be what i'd call helpful. please understand my concern, i'm pro Mikovits. but that is a pretty outrageous statement, isn't it? i really dont' want to be sent to leper island, & i can't see how a statement like that is good PR for us. hurry science along yes, but cause public chaos no. please.
so i'm worried, this worries me. she must be very tired. i am grateful to this lady, but is she losing perspective / control?
please understand this is a question, i am one of those who believe in my bones XMRV is sensible, i feel it - but... the worse epidemic we have ever seen? how can that be? how can i be that dangerous? no one i know has this.
if someone could explain, these claims seem over the top a bit? no?
i understand they are linking XMRV to lots of things & that she is sayin IF nothing is done but it still seems to be some very strong statements.
help! i dont' get it.
 

gu3vara

Senior Member
Messages
339
Regarding the worse epidimic, I'd say probably the worse silent epidimic but nothing more. It's obviously not that easy to catch though, perhaps it can only be transmitted at very specific times, like an herpes outbreaks. My dad had herpes outbreaks for 30 years and that doesn't mean my mother has it. Probably the same thing. The consequence of having CFS is just waaaaaayyyyyy worse!
 
Messages
13,774
I've always been a bit concerned about the WPI's PR. I think that articles like this are the inevitable result of it.

It will make things extra funny if the WPI's work is validated, but it's going to lead to less people giving them the benefit of the doubt until this happens.

I Mikovits really thought speaking at the 'autism now!' conference was going to get people to take XMRV more seriously, that seems a bit naive. The quotes in this article aren't kind to her, and while it wasn't a hatchet piece, it definitely has a negative tone... but she still gave them the quotes. The WPI's PR, and some of the things Mikovits says to reporters, seem counter-productive to me. They've been behaving how a lot of patients would like them to, and to me, it's shown that this is not the best approach.

PS: Coffin didn't sound that down on the WPI to me. I don't think he's on anyone's side at the moment.
 

Rrrr

Senior Member
Messages
1,591
when i spoke to coffin (and included that talk/Q&A on this forum) i felt he was very sympathetic towards people with CFS and very eager to get to the bottom of xmrv, and working very hard at an assay to ID it with the NCI folks (the rusetti's) (sp?). he also mentioned, when we talked, that contamination could be an issue. but he was not taking sides. the reason he was very hesitant about in having me post my talk with him on this forum (which he eventually agreed to) was because he said he is often misquoted or the press stressed the wrong parts of his statements. etc. something i find happens ALL THE TIME when i talk to the press about my own work (not related to CFS). i have been interviewed many many times by the press and only once did they get my statements right. and that was because the reporter asked to tape record our conversation.

so never believe any quote you read in the press. literally. not coffins or judy m's.
 

serenity

Senior Member
Messages
571
Location
Austin
ok RRRR, i buy that - i hope she did not say those things. i hope things like that will be kept to a minimum.
 

Rivotril

Senior Member
Messages
154
havent read the whole thread so maybe this is said before but:
The article was kind of giving a negative impression on Mikovits, maybe with some interests involved.
Van der Meer talking about they wanted good science, while he's the last person on earth to say this after the Kuppeveld study, by not mentioning that WPI had tested the Dutch samples negative. So this article was for me kinda crap.

But: I don't see that WPI is just alone in this, as a small institute in Neveda with nobody with them

Robert Silverman, who "discovered" XMRV is involved, Ruscetti, who is in retroviruses since the seventies, is involved, these are big people and they also have their careers. And Ruscetti critisised Van der Meer for his "science" , and there is not one real replication study to date, and WPI NCI and CDC will work on a valid test.
They can publish negative papers till they drop, but when there is a validated test, and you are XMRV+, than you are XMRV+

The only concern could be that there will be so much negative publiciity that they will stop everything on XMRV, but that wont happen
XMRV is also involved in cancer issue so Coffin said they are working on a test.

But this article shows once again that Van der Meer is mega influential in this game..
it is so strange that he's always the spokesman, while he is not a virologist nor psychologist...

he wants good science but on Dutch tv he wouldnt react on Meirleir because the said that Meirleir was taking the truth not seriously...
 
Messages
36
Regarding Coffin's quote: as someone who has had to deal with media before and seen them create a story out of nothing - don't read it as any more than it literally says. Media's job is to paint a picture and create a story. To do so, they piece together bits and pieces like someone who cuts up a newspaper and uses the print to write a letter. The end result may have very little to do with the speaker's original intent.

Assuming Coffin made that statement, and I have no reason to doubt it, it means nothing more or less than it says. Of course there might have been a fundamental flaw with the original study. What's the probability of that? He doesn't say. Maybe he thinks it is 0.00001%. Maybe 99%. The statement is close to meaningless.

It certainly shouldn't be used to decide that Coffin is on one "side" or another. A good scientist wouldn't choose sides anyway, they would pursue the truth. That's very different from the job of a journalist.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Too bad this is biased, but that's par for the course. Posted a comment:

The overarching problem in ME/CFIDS is that a small group of people- at CDC, NIH, UK MRC and a handful of mostly British psychiatrists have intentionally, clearly and consistently warped the science on ME for the last 25 years.

Additionally they have caused ME research to be grotesquely underfunded and CDC misappropriated funds for many years all the while consitently lying to Congress and the public about it. NIH funding for native american and eskimo health is $177M while ME/CFIDS gets $5M in a good year. ME is a common and extraordinarily disabling NeuroImmune Mitochodrial disease strongly linked to 2 exogenous retroviruses and otherwise vanishingly rare lymphomas. At least a significant minority of cases are probably spread by aerosol- ie through the air like a cold. The studies show it is more disabling than AIDS but only gets 1/1,000 th the funding. We need govt funding increased 1,000 times (not percent) and spent on valid biomedical studies!

I'll add that Dr. Mikovits is a consumate scientist and Dr. Van der Meers work on ME is a bad joke (inter alia his study on XMRV studied patients with idiopathic chronic fatigue, but he is still trying to pass them off as ME/CFIDS patients).

JustinReilly,esq. (06/08/2010, 6:40 PM )
 

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
Well, if you consider the possibility of cancers that might be caused by this, it may actually be the biggest in history. I have actually been thinking of that. Throw in autism and fibromyalgia. The possible impact it bigger than huge.

This all reminds me of the football coach history at our local high school. (I am talking American football. Actually, I am talking about Alabama football. This is where football is identity. It determines what color clothes you where and where you spend your Saturdays. It determines where your child goes to college.)

Anyway, in our school's relatively short history, we have been through many coaches. School opened in 1996. Football coach was well-liked and had fairly successful team, with the limitations of a brand new school. He left for a better paying job in another school system.

Second coach was from neighboring city. He was quiet type. But he took the young program to a state championship. But right after, he was offered a job back in his home town as head coach. He took it to go back to his home school, where he had been for decades before coming here.

Third coach was well-liked. He had fairly successful teams. Made regionals, but no state championship. But he ended up in a power struggle with the principal and tried to stick it out, but eventually took another job to get some peace.

Fourth coach came from another part of the state. He was very anal in his approach with complex plays all on color coded arm bands. He would call out a play and all the players had to stop and look at their arms in the middle of the game. Still, the team did fairly well. What was most important was that the home team beat their rival under his coaching. But he spent too much time talking on the phone with women and left suddenly amid rumors of extra curricular activities, if you know what I mean. He went back to his home and his wife stayed.

Next coach was from smaller school and did not have a strong record. He had a good personality, but was extremely passive. He didn't have a strong voice. And he didn't push the team, it was a laid back approach. And if things didn't go well on the field, he could be heard saying, "Oh shucks." First year he was shown patience as the team, with strong history of success, did not place well. But the biggest problem was losing after four-year winning streak against the arch rival. So he left and went back to his little school, more his level.

In comes coach number six within twelve years of school . (if you are counting, that's two years per coach, on average.) He came in with reputation of making parents mad, but having pretty good winning record. I covered his speech to the booster club. (For those who don't know, that's parents who work to support the team with fundraisers and volunteer work.) He laid out his rules:

Team members will thank the lunchroom ladies.
No absences from practice unless sick or death in family or involvement in another school activity. No, your brother's wedding rehearsal is not an excuse. You can go to the wedding, but the rehearsal is social event, even if you are in the wedding.
You must say "yes ma'am" and "yes sir" to teachers and other coaches.
He said he is willing to speak to the parents about any topic except what position their son is playing and how much play time your son is getting. He said he is the coach, not them. He said he is willing to speak to them any time through phone or e-mail about their son's grades, or any other issue.
He said if a player breaks his rules once, he gets a warning. Twice and he is off the team. He can not come back on the team unless another team member sponsors him. If he messes up again, they both are off the team.


I left from this meeting thinking.... well, his ways are unorthodox. He may get some parents mad. But it will all depend on whether the team wins. If the team wins, especially against the rival, then they won't care about how unorthodox his rules are.

And I was right. The team did well the next season. And they did well the season after that. It didn't matter how strict or hard on the players he was. It didn't matter he made them dress better than the other students. It mattered that he won the games.


It won't matter what Mikovits has said and done now if she turns out to be right.

At this point, she has invested all her balls into this and no one is putting in their balls. So there is nothing to lose by making people upset at her unorthodox method. The money isn't coming into that research anyway. Speaking out to draw attention might make things stay the same or may make things change. But if she doesn't, then they will surely stay the same, which is not acceptable in this case.

As every Alabamian knows, you can get good grades, but what is really important is winning the games.

Tina
 

serenity

Senior Member
Messages
571
Location
Austin
i have concerns about the aftermath of the game, not just whether or not our team wins. no offense intended but my point is that i dont' want to be lynched. panic over an epidemic outbreak will not be good for any of us.
 
Messages
22
Beware - Pharmaceutical and Health Insurers Are Corrupt

I certainly agree, though, that no matter what happened the WPI - this small research Institute out in Nevada for God's sake - was always going to have trouble from the powers that be. How could there not be a good amount of professional jealousy directed at them and VIPDx? Some researchers must of blown a blood vessel when they saw them on Science (and get all that publicity). It's like a new guy showing up at school and snatching up the Class Princess - ouch! Researchers are not necessarily nice objective people. They can carry grudges like anyone else....

I agree that's gotta be a problem- I just don't know if Dr. Coffin is involved - he was pretty enthusiastic there at the beginning; it was really a big help having a retro virologist of his stature backing the finding. You may know better than me since you were there but I think of this as just a quote she took.


[video=youtube;PR7V-rCTnjw]http://www.youtube.com/watch?v=PR7V-rCTnjw[/video]

Here's a video that might interest you all. Its about how Bayer ( makers of Aspirin ) in the US were forced to withdraw a batch of factor 8 becuase it was contaminated with HIV and Haemophiliacs were dying of aids due to the tainted treatment. Bayer subsequently knowingly dumped the tainted factor 8 in France, Spain, Germany etc. Officials in those countries responsible for this were jailed. No one in the US was even prosecuted. Mike Papantonio who is speaking here is a lawyer who was the partner of RFK Jnr in their legal practice. Their law practice have taken on corporate interests in the environmental area and they have a channel on youtube called GoLeftTV

http://www.youtube.com/golefttv

Anyone who doubts that corporate interests might deliberatly stymie XMRV as possible cause of CFS watch this next video ( in 10 parts ) about what they did to Dr Andrew Wakefield a gastroenterologist who dared to investigate and research the horrendous bowel symptoms autism often patients experience. Ofcourse we all know Autisim is a phsycological condition and will probably remain one so that autism sufferers and their families do not qualify for help caring for their sick children. Dr Wakefield has discovered that the MMR vacine has had no safefty research done and all he is saying is that their is enough evidence of a link between the MMR vacine and autism to warrent full evaluation.

[video=youtube;VsYdp-WDxL0]http://www.youtube.com/watch?v=VsYdp-WDxL0
[/video]

[video=youtube;ScDSUaIikgk]http://www.youtube.com/watch?v=ScDSUaIikgk[/video]

[video=youtube;AHP8FFna2RU]http://www.youtube.com/watch?v=AHP8FFna2RU[/video]

[video=youtube;XHcexNGGdR4]http://www.youtube.com/watch?v=XHcexNGGdR4[/video]

[video=youtube;tNkAKqk6q1E]http://www.youtube.com/watch?v=tNkAKqk6q1E[/video]

[video=youtube;gzGJzk5XdL0]http://www.youtube.com/watch?v=gzGJzk5XdL0[/video]

[video=youtube;tt2GpR0cn3w]http://www.youtube.com/watch?v=tt2GpR0cn3w[/video]

[video=youtube;4SiF-bEUi5Y]http://www.youtube.com/watch?v=4SiF-bEUi5Y[/video]

[video=youtube;ZrKFBlJxcOM]http://www.youtube.com/watch?v=ZrKFBlJxcOM[/video]

[video=youtube;k_B0h_dOp5c]http://www.youtube.com/watch?v=k_B0h_dOp5c[/video]