Prof. R Virology.ws quotes Derek Lowe's blog

urbantravels

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http://www.virology.ws/2011/01/11/derek-lowe-on-how-science-gets-done/

I tried about seven or eight times to post my response, but the Disqus system ate it each and every time. (I sent a pleading email to the blog saying I was having this problem.) In the meantime, just to get it off my chest, here is what I wrote:


Where I see evidence of bad faith is not in the published science itself, but in the misrepresentation of the conclusiveness of any one piece of evidence by the researchers themselves, and the subsequent echoing and amplication of those misrepresentations by the press and the Internet.

Such, I believe, was the case with the press release issued by the Wellcome Trust, which went so staggeringly far beyond the hypothesis presented (and so far unverified by other workers) in the Hue paper. To paraphrase Mark Twain, reports of the death of the XMRV/CFS hypothesis have been greatly exaggerated. It would help if the scientists themselves were not so eager to help write the premature obituaries.

Early science is messy and contradictory as hell and can get ugly; scientists, and even some informed laypeople, understand this, and can even see rigorous debate as a good and healthy sign. When information about the messy goings-on get filtered to the outside world via the press, however, either the mess is made to seem like mistakes, confusion and lack of progress (which we ought not to be wasting money on), or the mess is de-emphasized in favor of tidy conclusions that are often supported by privileging the claims of one side in a debate that may have multiple sides. (And if conclusions have been reached, we shouldnt be wasting money on further investigation.)

We have seen how eagerly and uncritically the Wellcome Trust press release was carbon-copied into dozens of press outlets, blogs, Tweets, and spread around the world unchallenged. Why is this a concern, in the particular area of ME/CFS research? Because reporting premature conclusions in this matter serves to reinforce an old and very damaging narrative about CFS: that the cause is impossible to find; that repeated efforts to find the cause have all been blind alleys; that ME/CFS is a vague and ill-defined illness, with the implication that an organic cause can never be found and then were back in the hysteria wastebasket, with the century-old ideas of Charcot and Freud to weigh us down.

Public opinion affects support for research in very real terms; so does the official stance of the public health agencies. We have already seen several decades in which the NIH officially considered ME/CFS to be a form of depression or conversion disorder - based upon no particular hard evidence - and instructed the press to treat it accordingly. So there were few to protest when ME/CFS research was underfunded, or when funds intended for biological research were diverted elsewhere, or when grant applications for what little money was available were routinely turned down by expert panels with no expertise in the disease. The NIH is showing encouraging signs of changing course in recent years, but we have yet to see the result in terms of hard dollars: is there any other disease as serious and disabling as ME/CFS that recieves so little NIH funding?

http://report.nih.gov/rcdc/categories/#bpopup

The recent article that appeared in Science magazine, though reasonably fair overall, ended on a rather sour note, which seems to me a pretty clear indication of how negative perceptions inside and outside the research community can start to lead to a chilling effect on research:

http://www.sciencemag.org/content/331/6013/17.full

As the new [NIAID/Lipkin XMRV] study gets started, some wonder whether its worth the $1.3 million it will cost. Jonathan Stoye of the MRC National Institute for Medical Research in London concedes that the Towers study was over-hyped. But he says its pointing people in a certain direction, away from chasing an elusive link to XMRV. Still, he says, a larger study may be the only way to satisfy [CFS] patients.

The journalists favorite gang of straw men, we all know, is some. Who are these some people who are already suggesting that $1.3 million is too handsome a sum to spend to get good answers on XMRV, in the face of these supposedly damning recent publications on contamination? Stoye seems to be saying that the only reason to proceed with the study, in his opinion, is to shut up the patients. This implication does a disservice to the NAIDs motives in ordering and funding the study. If XMRV truly does cause or contribute to human disease, then its not just the problem of a group of querulous patients who wants answers its everybodys problem, and NIH doing due diligence to look for those answers is the proper way to serve the public interest. To suggest otherwise does, indeed, smack to me of bad faith.

Thanks, as always, to Professor R. for serving as a voice of sanity amid the cacophony.

(Apologies if this appears more than once this Disqus system has an unfortunate habit of eating comments.)
 

urbantravels

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Glad to report that Prof. R responded to my email almost right away and got the problem fixed, so that my comment is now appearing on the blog. Apparently my comments were getting hung up in the "spam" queue but he was able to fix the problem. What a guy!

I'd encourage anyone else who has had problems with the Disqus commenting system on the virology.ws blog to let Prof. R. know of the problem, he said he's only had a "few" complaints about Disqus, but I feel like I've heard more than a few complaints here and there.
 

Megan

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Where I see evidence of bad faith is not in the published science itself, but in the misrepresentation of the conclusiveness of any one piece of evidence by the researchers themselves, and the subsequent echoing and amplication of those misrepresentations by the press and the Internet.

Such, I believe, was the case with the press release issued by the Wellcome Trust, which went so staggeringly far beyond the hypothesis presented (and so far unverified by other workers) in the Hue paper. To paraphrase Mark Twain, reports of the death of the XMRV/CFS hypothesis have been greatly exaggerated. It would help if the scientists themselves were not so eager to help write the premature obituaries.
Well said! And they wonder why patients are having trouble trusting some scientists. Simply showing your own study is contaminated is no evidence that anyone else's is.

I too had trouble posting on the blog so gave up. It looked like it had been submitted OK but just didnt appear later on.
 

urbantravels

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Sounds like you had the same problem I did, Megan. My comment kept showing up and then not being there when I came back to the page. Anyway, definitely email and let Prof. R know if it happens again.
 

illsince1977

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Bravo, or should I say brava(?), Urbantravels! How articulate you are! I imagine these words were forged in the flame of a great deal of suffering, unfortunately. You do us all credit. Thank you from the bottom of my heart!

:thumbsup:
 

urbantravels

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Thank you all. I just about gave myself a PEM yesterday trying to get that comment to actually show up - at the start of my multiple attempts to post, the entire first version got completely eaten by Disqus and I had to start over from scratch! (This time in Word so I'd have a copy.) But I was so touched that Prof. R. immediately responded to my email, fixed the problem, and encouraged me to get others to tell him if they had problems with the Disqus commenting system.

I also did finally get the comment through to the original source blog (Derek Lowe's "In the Pipeline") after several attempts. I think spam filters don't like comments, that include links or something. A pity for those of us that like to back up our statements!
 

floydguy

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Thank you all. I just about gave myself a PEM yesterday trying to get that comment to actually show up - at the start of my multiple attempts to post, the entire first version got completely eaten by Disqus and I had to start over from scratch! (This time in Word so I'd have a copy.) But I was so touched that Prof. R. immediately responded to my email, fixed the problem, and encouraged me to get others to tell him if they had problems with the Disqus commenting system.

I also did finally get the comment through to the original source blog (Derek Lowe's "In the Pipeline") after several attempts. I think spam filters don't like comments, that include links or something. A pity for those of us that like to back up our statements!
I am encouraged Prof. R made an effort. I hope that he won't jump on the bandwagon so quickly next time. Thanks for your effort. I think we can make a difference with such postings.
 

WillowJ

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Thank you all. I just about gave myself a PEM yesterday trying to get that comment to actually show up - at the start of my multiple attempts to post, the entire first version got completely eaten by Disqus and I had to start over from scratch! (This time in Word so I'd have a copy.) But I was so touched that Prof. R. immediately responded to my email, fixed the problem, and encouraged me to get others to tell him if they had problems with the Disqus commenting system.

I also did finally get the comment through to the original source blog (Derek Lowe's "In the Pipeline") after several attempts. I think spam filters don't like comments, that include links or something. A pity for those of us that like to back up our statements!
I've had lots of trouble with comments having links not show up, too. I did see your comment on Lowe's blog and loved it. Well done!