Science article "False Positive" chronicles XMRV research controversy

[ixchelkali]

http://www.sciencemag.org/content/333/6050/1694.full.pdf

The tone of the article is pretty ugly. Lots of people who want to say "nyah-nyah" to Judy Mikovits are given an opportunity to do so. It seems to focus more on the personalities involved and on discrediting Judy Mikovits than on the actual XMRV science (complete with an unflattering photo of Judy and a smiling photo of Simon Wessely). Simon Wessely repeats his death-threats-from-patients cant.

I'm not an apologist for the WPI or Judy Mikovits, although I appreciate their efforts on our behalf. I've been in the "let's see what the science tells us" camp on XMRV. At first I thought the science looked very promising. Now, it doesn't look good to me. Contrary to what some people believe, I think that some of the negatives are scientifically solid, such as Illia Singh's study. This BWG study was well designed, too, although the sample size should have been larger, and it's seriously disappointing that the WPI couldn't consistantly differentiate between positives and controls.

But this article looks like they're trying to savage Judy Mikovits, and getting a few digs in at patients while they're at it (like mentioning our mistrust of the CDC without mentioning the history behind it, such as the misappropriation of funds). Reminds me of a wolf pack circling in for the kill. I guess that was predictable, but I didn't expect it would show up on the Science website.

Oh, and it has a couple of quotes from the PR forum and from Cort, too.

BTW, you have to go through a free registration to read the full article.

 

[Ecoclimber]

View attachment science false positive.pdf

For those who do not have a subscription

 

[Dreambirdie]

What a HORRIBLE bunch of crap they wrote. Just awful how they turned it into an attack on those who are trying to help us.

And this is called "Science," the most prestigious of the science journals. It's a joke, right?

 

[*GG*]

Yeah, who published this, the National Enquirer (by just looking at the pictures)? Looks like a horrible joke!

GG

PS Hopefully some of these "smart" people will find out what the hell is wrong with us! Do something already, people have been sick for decades and are dying and have taken their lives due to inaction of many people, governments and organizations!!

 

[justinreilly]

So CAA is still billing itself as 'advocates' and 'a patient group'? They also really should change their name since they do not have members, only donors, the vast majority of patients polled oppose them and the fact that they have declared they are out of the advocacy business.

Today's Science magazine article:
"Even disease advocates who welcome the attention XMRV has brought to CFS believe the time has come to put this line of research to rest. It's hard to say that this has not received a fair appraisal, says Kimberly McCleary, president of the CFIDS Association of America, a patient group in Charlotte, North Carolina.

 

[xrayspex]

mccleary.......argh, do not even get me started. what a disgrace.

 

[Dorothy]

The Science editorial reads like tabloid trash in many spots. And the unflattering photo of a crabby-looking Dr. Mikovits paired with the quote "fine, leave us alone" is just awful. Not something I'd expect to see in a so-called prestigious journal. The New York Times article is so much more professional.

It was also sad (although I suppose not surprising) to read that Dr. Silverman was under a semi-gag order from the Cleveland Clinic and had to recently communicate by email delivered by a public affairs manager, and that other institutions were restricting their researchers' speech regarding XMRV. What a mess.

Also the vehemence of Robert Gallo - "all of it's a waste of money and it's wrong" is terribly disturbing. Wrong? What's wrong is that I've been sick more than two decades and far too many people still think I'm just overweight and under-exercised, and that I (along with everyone else) am somehow not worthy of having a decent amount of money spent on trying to find the cause of my extremely nasty, debilitating, life-altering horrendous neuroimmune disease.





The only good news is that Ian Lipkin plans to continue his study - but Science didn't seem to be aware that results certainly won't be ready by "early next year" since the study is barely even getting started.

 

[Ernie]

They need to change their name to National Science Enquirer. Sheez what in the world happened to scientists I used to hold them in such high standards and they resort to slinging garbage at each other and at sick patients. I'll just continue being my own doctor. I do a better job and have been doing it for 20 years anyway.

 

[SilverbladeTE]

Gallo's got a cheek! *cough*
HIV, US-French catfight wasn't exactly a "High point" of Science

and the hatchet job is not surprising, given what's been building, how the "Death threats to Wessely" stuff was punted way ahead of this in anticipation of this negative findings publication....

 

[eric_s]

I have now read the article and i think it's good apart from the title and the beginning and some of the pictures. It makes me wonder why Ruscetti still seems quite convinced. I just hope they will provide evidence why they think the BWG study got it wrong. And i would like to hear an answer to the question wheter they have done the exactly same thing as this latest BWG study in their own lab and what the result was. What i really wonder is why Science and the PNAS published Lobardi et al. and Lo et al. without asking the authors to do the tests under blinded conditions. I'm no scientist, but shouldn't it be one of the most elementary things to do that kind of experiment blinded?

 

[Jemal]

I have now read the article and i think it's good apart from the title and the beginning and some of the pictures. It makes me wonder why Ruscetti still seems quite convinced. I just hope they will provide evidence why they think the BWG study got it wrong. And i would like to hear an answer to the question wheter they have done the exactly same thing as this latest BWG study in their own lab and what the result was. What i really wonder is why Science and the PNAS published Lobardi et al. and Lo et al. without asking the authors to do the tests under blinded conditions. I'm no scientist, but shouldn't it be one of the most elementary things to do that kind of experiment blinded?

Apparently Ruscetti still thinks they are on to something? He still is one of the big guns, so I believe things are not as black and white as they were presented yesterday. Looks like more research is needed, unfortunately...

 

[Esther12]

I've generally been impressed by Ruscetti - he comes across as a really intelligent and sensible person. It would be interesting to hear me about how he explains the BWG results. Maybe it doesn't really matter, and we should just wait for Lipkin? I get the impression that Ruscetti's more interested in working in his lab than joining in a debate - at this point the WPI probably need compelling new data more than they need explanations.

 

[justinreilly]

I have now read the article and i think it's good apart from the title and the beginning and some of the pictures. It makes me wonder why Ruscetti still seems quite convinced. I just hope they will provide evidence why they think the BWG study got it wrong. And i would like to hear an answer to the question wheter they have done the exactly same thing as this latest BWG study in their own lab and what the result was. What i really wonder is why Science and the PNAS published Lobardi et al. and Lo et al. without asking the authors to do the tests under blinded conditions. I'm no scientist, but shouldn't it be one of the most elementary things to do that kind of experiment blinded?

When I read in the article that Lombardi et al wasn't blinded, I thought that was a reporting error. I don't have the energy to go look. Does someone know?

They did make some sloppy mistakes, like the unquestioning mention of Wessely's editorial on how all the patients were from the Tahoe outbreak.