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XMRV Article in Chicago Tribune and other papers

redo

Senior Member
Messages
874
I contacted the reporter, and she has rather kindly agreed to try to get the full e-mail Mikovits sent her put on-line as an attachment or supplement to the original article. If it goes ahead, it should be available on Monday or Tuesday, and then we'll be able to see exactly what was said.

She also mentioned that her autism articles, which some here had complained about, had won a national health reporting award.

Good Esther. I doubt she'll do it, but I'll be positively surprised if she does.
 

MEKoan

Senior Member
Messages
2,630
A slightly different perspective...

In my old life I interviewed hundreds, perhaps thousands, of people. I often had the story in mind before conducting the interviews. In fact, my funding often depended on the "treatment" I wrote for the film and those who supported my efforts expected that my story would match, in broad strokes, what they approved with their money. On more than one occasion, I have abandoned projects because I found that reality did not match my proposal.

But, within that paradigm and within ethical boundaries, I asked leading questions.

So, let us consider what might have been asked of Dr Judy and Dr Coffin. Let us also consider that the question must be repeated in an email "interview" as, otherwise, there would be no way to indicate what question is being answered. And, let us bear in mind that quotes are taken very selectively.

So, Dr Coffin is asked: Is it impossible that there is something fundamentally wrong with the initial study?

Only conceivable answer is the one he gave: "It is not impossible that there is something fundamentally wrong with the initial study."

We have no way of knowing how he may have expounded on how likely this was.

And, if Dr Judy, who believes XMRV may be implicated in prostate cancer, Austism, atypical MS as well as ME/CFS and probably more cancers... were asked: With the numbers you talk about this would be bigger than AIDS in Africa, surely you have made a mistake?

A very reasonable answer, related to epidemiology, would be: Our continent will be like HIV Africa only worse.

There is absolutely no reason to assume that she is, in any way, comparing human suffering.

What she says about the politics is simply true. We all know that. The fact that she is willing to stand up and say so, and put herself on the line for us, does not make her hysterical or alarmist or any of the other things she has been called in this thread, it makes her courageous. Perhaps we are unaccustomed to seeing this level of courage and that freaks us out.

Others have made excellent points in this interesting conversation. I just wanted to drop in and point out that I, in my role as interviewer/editor, could make anyone appear to say virtually anything I wished them to say. And, I had them on camera where you could see their mouths move and notice when I cut away. It is amazing how easy it is to mislead the audience. It was frightening, really.

Ok, that's it for me. Taking a big hiatus.

peace out good people,
Koan
 

natasa778

Senior Member
Messages
1,774
In my old life I interviewed hundreds, perhaps thousands, of people. I often had the story in mind before conducting the interviews. In fact, my funding often depended on the "treatment" I wrote for the film and those who supported my efforts expected that my story would match, in broad strokes, what they approved with their money. On more than one occasion, I have abandoned projects because I found that reality did not match my proposal.

Thanks for that Koan.

One thing about Trine Ts-whatever: if XMRV link to autism ever pans out (in fact if ANY biological/potentially treatable link to autism pans out) Trine will be exposed a complete scumbag that she is. There is just NO WAY she didn't have a preconstructed story in her mind for this article. Too much to lose.

As for her "national journalist reward" for writing about autism, it is a fake award funded by the CDC...
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
Tsouderos' Chicago Tribune XMRV article runs in L.A. Times

The Chicago Times XMRV article by Trine Tsouderos will be in the Monday June 14 Los Angeles Times health section. It is already on the L.A. Times online edition.

http://www.latimes.com/news/health/....A. Times - Health)&p=1&utm_source=feedburner

At least the headline "The push and pull over a chronic fatigue syndrome study" isn't as bad as Hope outrunning science on chronic fatigue syndrome." :worried:
 

Frickly

Senior Member
Messages
1,049
Location
Texas
Hope Outrunning Science on Chronic Syndrome?

Just saw this story pop up again in a local newspaper. This one titles it "Hope Outrunning Science on Chronic Syndrome?" I am not sure what to think about this, except, I kind of like the "Fatigue" taken out. Now if they would do something about the "syndrome" part. Still.....I think it is just bizzare that all these papers are printing this story. :confused:
http://www.aikenstandard.com/Local/0614-healtth-GOFRONT
 
Messages
39
Why does everyone presume that the WPI is "okay" with the Dr. Mikovits interaction with the Trib reporter? Has anyone asked the WPI?
 

Frickly

Senior Member
Messages
1,049
Location
Texas
John, I certainly do not assume that WPI is ok with this article and not sure if this is the assumption by anyone else on this thread. I think there is a reason why this story is being published everywhere and I would like to know what that reason is. It's not even a good story! Is there a study coming out? It is just strange.
 

citybug

Senior Member
Messages
538
Location
NY
Someone earlier said why is Dr. Mikovits talking about autism. Her part of the conference was not recorded. I was watching in case there was a change. She was to the side of the platform and then simulcast was cut off. The attendees were told not to talk, so even people on here were not reporting on the conference. It seems like there were rumors and the author didn't actually get info, but went with it anyway. Dr. M doesn't make a peep about autism. The article doesn't have any new facts or information in it except that patients are blogging about antiretrovirals. The article goes for any sensationalist aspect of anything that happened in this eventful year without investigation.

One parallel to the AIDS crisis in Africa that I think is relevant is that governments were saying that it was not caused by HIV virus and not taking action.

I don't think anyone's emails that weren't written for publication should be published without their permission. (I wish this forum had more privacy. Why do person symptoms or this discussion have to be on google?)

DeFreitas said her virus showed up at specific times in the illness. Maybe it was part of the outbreak phenomenom or amplified by xmrv or later suppressed by the immune system. I think that retrovirus will be rediscovered later.

After we had all clamoured for DeFreitas to be taken seriously, I found that we were being taken less seriously, and I am afraid that this will only worsen the louder we shout about something else that is just as unproven. Not to mention the loss of hope that comes each time something promising fails to deliver.

I want people to be active, but I realize a lot of people are afraid to get their hopes up. If they can't invest emotionally I wish they could just donate to WPI and not think about it. Then research goes on and they can wait for results of trials.

Meanwhile, there is some unpublished data showing 60 percent of ASD children either have the live virus or antibodies for it. .....
One more point, bringing awareness to the autism community may also bring in funding for XMRV research. It would be great if the money were used to find the cause instead of searching the genome for centuries. Many ME/CFS patients are too sick to advocate for themselves. Parents of ASD children have more energy (well, except those with ME) and are not afraid what some amateur writer from Chicago thinks.

I do think all the groups affected have to work together. It is just too big. And I think lyme, autism and other groups will be very fast to commission some studies to check out the possibility, while CFS groups say wait and see. Is it that we can't take the stress? Are people with MECFS not giving $10 for this research? Okay now I'm thinking maybe sensationalism will back fire, being associated with a "disgraced" researcher could bring in lots of money.
 

citybug

Senior Member
Messages
538
Location
NY
Well the poll said everyone thought national news was the best action. Now there are more places to leave comments.
 

JillBohr

Senior Member
Messages
247
Location
Columbus, OH
I do think all the groups affected have to work together. It is just too big. And I think lyme, autism and other groups will be very fast to commission some studies to check out the possibility, while CFS groups say wait and see. Is it that we can't take the stress? Are people with MECFS not giving $10 for this research? Okay now I'm thinking maybe sensationalism will back fire, being associated with a "disgraced" researcher could bring in lots of money.

kdp- It is horrible how little CFS is funded. Absolutely horrible.
 

JillBohr

Senior Member
Messages
247
Location
Columbus, OH
I share some of the concerns of many on this board. I think many of us, including me, are anxious not to see JM put a foot wrong as this seems such a battle for us and she is our flag bearer for CFS/XMRV. But I too feel that there are some double standards being used against Judy Mikovits and the WPI.

I have seen her criticised for speaking of unpublished data, not just on this forum. I am not from the scientific world but I get the impression that this happens all the time without people copping such criticism. eg. Myra McClure of the Wessley study revealed positive findings of her as yet unpublished XMRV/prostate cancer study on a radio program in Australia. Didn't Dr. Huber reveal her unpublished (unpublishable?) results at a recent conference? Likewise I recall unpublished results of XMRV/prostate cancers at the CROI conference in February. Weren't the Japanese XMRV blood bank test results revealed at a conference without a published paper? I get the impression it is normal to reveal such things at scientific conferences, or in McClure's case in the media. Why outrage directed at JM and not these others?

It was John Coffin who said at the CFSAC conference last year the "pathogenicity of this virus should not be underestimated", based on the action of closely related mouse viruses in other mammals (and other retroviruses in humans). He was clearly indicating that the scientific community should not be treating this virus is benign until proven otherwise. In this context it could be seen as responsible to be alerting people about it. I would think this is a genuine moral conundrum for any scientist when faced with such a situation.


I know Judy talks about disease associations with other illnesses, but speaking of an association is not saying it is a cause. We don't even know what she said at the autism conference. In the case of CFS she has implied it is a cause in public (perhaps with good reason) though not in her papers. And lets not forget the link with prostate cancer was already made before Judy became involved.

Thank You! Thank You! Thank You Megan! Thank you for pointing out this obvious double standard. I do not know you but I love you. I look forward to you posting some more.
 

V99

Senior Member
Messages
1,471
Location
UK
Huber mentioned the unpublished XMRV study, and the HERV-K thing, oh I can't remember, that is still being studied.
 

lululowry

Senior Member
Messages
103
Location
Athens, Georgia
John, I certainly do not assume that WPI is ok with this article and not sure if this is the assumption by anyone else on this thread. I think there is a reason why this story is being published everywhere and I would like to know what that reason is. It's not even a good story! Is there a study coming out? It is just strange.

Frickly,
It's been picked up by a news service wire and different papers are picking it up and using the story to fill up space. Many are often picking it up because of its length (they have a hole and this story is the right size). The parts that have been "edited" out have probably not been edited out with much care - they've been cut because an editor somewhere needed the story to be shorter and thought the cut bits didn't add much to the story.
For most editors, such stories are just filler to keep the ads from bumping up against each other.:rolleyes:

Lulu
 
Messages
85
Well the poll said everyone thought national news was the best action. Now there are more places to leave comments.

Yes, but will the comments further convince readers that patients with CFS are "crazy" or will they be neutral and factually informative? Leave the name calling in kindergarten. Most of the criticism in this thread boils down to "I disagree with what the sources in the article said." If the article had questioned Dr. Simon Wessely's work and you substituted his name everywhere Dr. Mikovats name was used I suggest that very few patients would write in to call it bad journalism. Nor do I doubt that defenders of Dr. Wessely would write in to complain because they disagreed with what was said. There is nothing wrong with the article. It presents many points of view. That's what journalism does. Nowhere in the article does the author cite herself or her opinion. If patients want to be taken seriously and considered credible it is unlikely that name calling and insults are going to achieve the desired goal.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
In my old life I interviewed hundreds, perhaps thousands, of people. I often had the story in mind before conducting the interviews. In fact, my funding often depended on the "treatment" I wrote for the film and those who supported my efforts expected that my story would match, in broad strokes, what they approved with their money. On more than one occasion, I have abandoned projects because I found that reality did not match my proposal.

But, within that paradigm and within ethical boundaries, I asked leading questions.

So, let us consider what might have been asked of Dr Judy and Dr Coffin. Let us also consider that the question must be repeated in an email "interview" as, otherwise, there would be no way to indicate what question is being answered. And, let us bear in mind that quotes are taken very selectively.

So, Dr Coffin is asked: Is it impossible that there is something fundamentally wrong with the initial study?

Only conceivable answer is the one he gave: "It is not impossible that there is something fundamentally wrong with the initial study."

We have no way of knowing how he may have expounded on how likely this was.

And, if Dr Judy, who believes XMRV may be implicated in prostate cancer, Austism, atypical MS as well as ME/CFS and probably more cancers... were asked: With the numbers you talk about this would be bigger than AIDS in Africa, surely you have made a mistake?

A very reasonable answer, related to epidemiology, would be: Our continent will be like HIV Africa only worse.

There is absolutely no reason to assume that she is, in any way, comparing human suffering.

What she says about the politics is simply true. We all know that. The fact that she is willing to stand up and say so, and put herself on the line for us, does not make her hysterical or alarmist or any of the other things she has been called in this thread, it makes her courageous. Perhaps we are unaccustomed to seeing this level of courage and that freaks us out.

Others have made excellent points in this interesting conversation. I just wanted to drop in and point out that I, in my role as interviewer/editor, could make anyone appear to say virtually anything I wished them to say. And, I had them on camera where you could see their mouths move and notice when I cut away. It is amazing how easy it is to mislead the audience. It was frightening, really.

Ok, that's it for me. Taking a big hiatus.

peace out good people,
Koan

I believe this, it appears to me that the media picks sides, even though it shouldn't. This is not in reference to this article, I read the blog that Cort referenced, and the reporter seems to be fair and concerned about our issues. I used to be more Liberal but am more a Libertarian now and see how the other side likes to "smear" their opponents. I believe in my fellow Americans more than Government. I work for gov't and see the inefficiences and corruption.