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OH, SNAP! Patient Advocate and NYT

urbantravels

disjecta membra
Messages
1,333
Location
Los Angeles, CA
I don't always agree with the PA (and I'm not a fan of the third-person style thing) but there's no question he can really hit the target when a good one presents itself.

check out his latest blog post, in which he wrote the NYT reporter Carl Zimmer about the NYT's coverage of Lipkin, and got a response in which they accidentally attached their internal exchange about "what should I say to this guy?" His response is a major, major snap.

http://cfspatientadvocate.blogspot.com/2010/12/amy-marcus-wsj-versus-ny-times.html
 

urbantravels

disjecta membra
Messages
1,333
Location
Los Angeles, CA
Sorry, PA, if you're reading this, it's just my opinion. I make style choices on my own blog which I am sure many might consider precious, but I decided they work all right for my subjects and the way I approach them. Choices that attempt to please everyone are pretty boring.
 
Messages
13,774
Funny to get the internal correspondace. I don't think it really shows them in that bad a light, considering it's a private news-room chat.

I think the PA is wrong to act like the XMRV issue was settled by the Alter/Lo paper though, and Lipkin's study could be the one to put this to bed.

I'm getting converted by wikileaks. I want all this stuff out there now. Maybe that's what the NYT was doing!
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
Yes, it's interesting to hear what goes on behind the scenes. What i don't get is why does the guy from the NYT think he has to reply? It's great that they do reply but i would have thought that if they don't feel like replying they will just not do it. I wrote to a newspaper here once too, after the Lo et al. paper, trying to make them aware of it, but i never got a reply. I think that's pretty normal.

And the sequences found by Lo et al. were more similar to XMRV than the HI viruses in two ranmomly selected HIV+ persons to each other, if i remember that article by Singh correctly...
 

leaves

Senior Member
Messages
1,193
Heheh yes Leaves agrees (this is actually quite fun, Leaves is considering keeping it up).
 

SOC

Senior Member
Messages
7,849
Sickofcfs is highly amused by the response of the so-called science editor. She is often amazed at the number of people who believe themselves to be experts because they obtain superficial knowledge on scientific subjects.

Sickofcfs also wonders where the science editor got the "scientific" information that he passed on to the writer. She thought that the urban legend that ME/CFS patients are rushing out today to get ARVs was largely discredited. She wonders what other urban legends the editor passes off to his colleagues as science.

Kudos for PA for bringing this to light.

Imitation is the highest form of flattery.
 
Messages
90
Location
Cleveland, Ohio
I also found PA to be right on the mark about the NYT. It has been my own most respected source of news for many years, but I have found it's coverage of CFS/ME to be poor on the whole, and absolutely missing in action on the XMRV issue. They do report seems second or third hand and is days after the original event. I get more current information on XMRV even by subscribing to press release services than from NYT. A big disappointment to me.
 

urbantravels

disjecta membra
Messages
1,333
Location
Los Angeles, CA
I agree that the NYT is really lagging on their coverage of this particular topic. Which is why I really liked the snap about directing the NYT reporter to the WSJ's excellent coverage in order to inform himself. :Sign Good one:

I've liked Carl Zimmer's other reporting, but it seems pretty clear that he's not well-versed in the state of play when it comes to XMRV.
 

Recovery Soon

Senior Member
Messages
380
I'm not a fan of the third-person style thing

If you view his posts in purely comedic terms you'll become a fan of his narcissistic style, which he seems oblivious to.

It's theater of the absurd (especially when he abbreviates with "PA"- pure comic gold).

That said, the analysis is usually very well reasoned and effective. I'm a fan.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I agree that the NYT is really lagging on their coverage of this particular topic. Which is why I really liked the snap about directing the NYT reporter to the WSJ's excellent coverage in order to inform himself. :Sign Good one:

I've liked Carl Zimmer's other reporting, but it seems pretty clear that he's not well-versed in the state of play when it comes to XMRV.

Not a fan of the NYTs in general! To slanted for my tastes.
 

andreamarie

Senior Member
Messages
195
How quickly we forget. Last yr when the Science article broke, the NYT was the ONLY paper to cover it extensively. I went on this board and begged people to write online comments to keep it going but only a few did. I read four newspapers a day online and NOWHERE was the amount of coverage that the NYTimes had. They had a photo of Andrea Whitmore! Actually if you didn't read the NYT you wouldn't know about it. One of my docs who's skeptical of XMRV said the NYT exagerated it and simply blew it out of proportion."You didn't read about it in any other paper," she said.

Beware the WSJ. They are mainly interested in the economic aspect of a health issue. Years ago they said CFS DID NOT exist and favored Unum.
 

urbantravels

disjecta membra
Messages
1,333
Location
Los Angeles, CA
Of COURSE the Wall Street Journal is mainly interested in the economic aspect of a health issue. This also just in: Water wet, sky blue.

I don't think anyone is kidding themselves about the reasons why the WSJ is giving such continuous coverage to new developments. I believe Amy Dockser Marcus is probably herself a compassionate person (she won awards for coverage of rare diseases before she got on the XMRV beat), but the WSJ wouldn't be giving her a platform for her reporting if there wasn't a very large and very real business angle to it.

As for the NYT giving a splash to the Science paper: What have you done for me lately? Stayed with the story, or sorta backed away from it when it got tricky? It's our fault for not writing enough online comments? No, not buying that argument. Online comments make some difference; reporters have their own personalities and biases; but newspapers *institutionally* decide what to cover for a whole variety of reasons.

The XMRV story got tricky after the Science paper came out; some outlets and reporters stayed with it, and some sorta let the story fizzle when the going got rough. I believe that right now, the NYT falls into the latter category, and their coverage on XMRV has been lagging and wishy-washy. This may change in the future. None of the above has anything to do with a particular paper or reporter being our "enemy" or our "friend."
 

pictureofhealth

XMRV - L'Agent du Jour
Messages
534
Location
Europe
Agree! I love his style! Its about the only laugh we get nowadays, and he is not actually rude as such without also highlighting the absurdities.
 

andreamarie

Senior Member
Messages
195
Actually the NYT has been covering XM research. As recently as Dec.13, in the Health section, it's part of an article and two people responded re CFS. One with a link to the Washington Post ad. Ian Lipkin was in the magazine section in Nov re virology and the work he's doing in autism. XM was again mentioned.

Newspapers have many reasons for staying with, covering a story. I was a p.r. person for ten yrs for the Crohn's and Colitis Foundation. When I started, NO ONE wanted to write or talk about bowel diseases. But when they did and got enormous response (we had EVERYONE writing letters to the editor, including Barbara Bush, who's son has ulcerative colitis) it really made a difference. When I left and my position wasn't filled, media coverage died. Tonight on the NBC news there was a spot about seriously ill children in hospitals getting Christmas presents. I knew the child they highlighted would have Crohn's disease (his father is a producer at NBC news.)
 

andreamarie

Senior Member
Messages
195
Please don't get me wrong; I'm thrilled to see any good coverage of CFS. Some of my friends actually thought the ad for Lyrica and FMS was coverage of CFS and FMS. Rich people read the WSJ and some of them undoubtedly have family and/or friends with CFS.