XMRV prompts media thought: ask for the ’state of play’

By Grant Jacobs 29/06/2010 64


Previously I considered that media might ask experts what is known rather than their opinion.*

XMRV (Source: Singh Laboratory, University of Utah.)
XMRV (Source: Singh Laboratory, University of Utah.)

The fuss about the potential link between XMRV and CFS over the past few months has reminded me of the need for coverage to present what the current state of play is.

One of the more frustrating things for scientists to watch is media reports jumping in too soon,** reporting each new finding in an unresolved story as if it were the last word.

It portrays each research paper as definitive on their own. Research papers are in effect an argument for a case, a case that might potentially later prove wrong.

’Instant’ blow-by-blow accounts portray science as a progression of abrupt discoveries, rather than an accumulation of smaller pieces from many different sources that lead to larger conclusions over time. It is true that occasionally there are genuinely startling findings that fly in the face of most of what was known in an area, but these are rare; much more usual are additions to what is known.

Sometimes research findings are contradicted by later studies.

One of the basic foundations of science is that experiments should be able to be repeated. Results should be reproducible.

When results cannot be reproduced, further work is needed to resolve what is true or not, to find out just what made the difference.

Often neither result is ’wrong,’ but rather slightly different (and valid) approaches show results that are at odds with eachother. This is frequently how new factors important to a story are uncovered.

The resolution of conflicting results can be quite technical. The different results might be due to different techniques, contamination, differences in samples, and other factors. Resolving them usually requires a detailed understanding of the area of science involved.

Last year evidence was presented that Xenotropic murine leukemia virus-related virus (XMRV) was associated with chronic fatigue syndrome (CFS), in a study published in Science. Other researchers found that they could not confirm the earlier results. Very recently a press release suggests that some up-coming work may back the initial claim of an association between XMRV and CFS. (The research behind this has not yet been published for other researchers to view, so this cannot be confirmed yet.)

I’m not going to discuss the details of the science in the XMRV-CFS story, other than to say it is still an unfolding story and one that ideally should be presented by a virologist. The footnotes contain some links for those that are interested.***

My focus here is on media reporting, in particular how new research findings are presented.

The XMRV-CFS story is an example of a story where the current state of play matters. Reporting the findings out of this context would be misleading.

Many media stories about XMRV (now) correctly point out that this an emerging story, which is good to see. I can’t but help feel that they’ve been bitten (at least) once earlier in this story and aren’t willing to be bitten again!

Press releases from institutes or vested interests (e.g. those offering testing services) may largely present things from their point of view, playing down or leaving out competing views. One reason that media reports that are largely rewritten press releases are looked down on is that they often do not provide the full context that the new findings fall within (if any at all).

Unresolved areas of science can become quite polarised especially when there are conflicting results, with some researchers falling into distinct camps.

Asking what one researcher’s findings indicate is likely to represent only part of the story, possibly a quite misleading part of the story if not placed in the full context properly.

In on-going stories – which in many sense is all science stories – interviewers might ask ’what is the state of play?’

Is this an issue that is still being resolved? Do other studies confirm that the new results are (likely to be) correct? What aspects are still uncertain or implied, rather than tested?

Are the new findings accepted by most specialists in the area? (Taking care to remember that it is the soundness of the evidence that matters; opinions, as distinct from evidence, don’t count for much.)

Have other specialists had an opportunity yet to view the research and think it through? This is particularly important if the news is new: it takes time to absorb the details of research findings. Rapid reporting, particularly of embargoed research, can get ahead of the time need to absorb the new results.

Like my earlier thought about asking what is known as opposed to the expert’s opinion, trying to understand the state of play is trying to understand the new results in the context of the literature or relevant scientific community as a whole, rather than the perspective of one person or one research paper.

All of this perhaps re-enforces that specialist stories are best in the hands of specialists, but at least appropriate questions might be asked.

Footnotes

* I have to admit that I feel awkward writing these advisories. What I am writing seems dead obvious to me, to the point that I feel in danger of coming across as an idiot writing them. Nevertheless, the same problems keep recurring in media reporting of science, so I presume these messages are needed. I can only hope that they have some value.

** Desperate consumers jumping on new results, and dubious therapists don’t help matters either.

*** On the potential association of XMRV with CFS. These notes are intended to provide links you may wish to investigate, not as a professional summary of what is understood. As this is an unfolding story, I would encourage people not to rush to conclusions.

Recent, views on the story can be found on at many places on the WWW. Note the discussions in the comments of these articles. This summary of an article that surveys the relevant literature (i.e., a review paper) may be an appropriate starting point for some. (This article also reminds readers that the initial discovery of this virus in humans was in association with prostrate cancer (open access summary article), something that seems to be getting lost in some reports.)

The latest fuss appears to be a recent press release that to my reading has been made by journalists sitting in on a conference presentation, claiming that research by the NIH and FDA back earlier work showing a correlation between XMRV and CFS. This announcement has been reported by these journalists ahead of the research paper, meaning that nobody – virologists or other experts in the specific field included – can comment meaningfully on these claims yet. The relevant institutions have not elaborated further, citing the work being in advance of publication. (A PDF file of the slides is available; see slide 10.) This is a single slide from a 30-slide presentation on issues in screening blood from donors. It is possible that, given their focus on blood screening, the up-coming work may not have direct relevance to CFS.

If it’s not already clear, I dislike advance media reports of this nature. I am similarly wary of reporting from conferences for a variety of reasons. (Too many to give here.)

Addendum (Added 2nd July)

Readers interested in XMRV-CFS might like to read ‘ERV’s take on the recent publication (yes, no, yes) fuss.

She points out a few things about the different ways of reviewing papers in PNAS that she considers might explain why PNAS is taking a second look at the paper (PNAS’ academy member review process has always been a bit of an unusual feature and a topic of discussion over the years.)

She also reviews the CDC paper. Head over there to read the details, she concludes: ’They used the same definition of CFS (1994 CDC Fukuda Criteria) as the Science paper. They used the same PCR conditions. They had two different labs blindly double check their findings two different ways. They couldnt find XMRV in healthy blood donors to an appreciable degree, […]’


Other science communication articles on Code for life:

Royal Society publishing free to read, 1665 – today

What is your relationship with your research notebook?

To link or not to link: mainstream media and no links at all

Professors, lost souls with great oratory power?

Science communication shorts


64 Responses to “XMRV prompts media thought: ask for the ’state of play’”

  • A very good explanation for people not in the field. As someone that has worked in about 4 different research settings, across a handful of fields, I find this approach in Journalism refreshing. I have CFS, but have yet to conclude anything about XMRV. I believe that I and a number of people with this disease felt that after the first few negative studies came out, the press shut it up as an open and done case. Many of us with the illness, that had prior training in science, have been portrayed as overly optimistic about the original findings. This is not the case. I simply want all the information to be evaluated and I did not feel that the second set of studies properly addressed all the evidence presented in the first set of studies. There were simply too many inconsistencies with data and methodology. I participate in a number of CFS blogs, and I believe that many of us were mis-portrayed by many of these same “science” reporters. They attempted to fit our arguments in line with a perception about our illness – hysterical, agitated patients, overly confident in a single piece of evidence that was “probably” overstated (their words). We were not overly optimistic, overly embedded in an XMRV centric theory… what we did, and still do want… is an opportunity for all data and points of view to be taken into account. It sounds as if this upcoming data has taken some of these concerns into account and this is promising. As someone with a science degree though… I can still point out, that additional causality studies will need to be shown.

  • Thank you for reporting on this. It’s crucial that reporting on scientific work demands someone with all the relevant facts. But as you say, the animal looks very different depending upon where you stand.

    I am not a reporter. I am someone with CFS that has been fighting so very hard for 17 years to understand, cope and trying without success over and over et. infinity to heal my broken body.

    But, I think it’s safe to say, that if media want the truest facts, the old strategy is the best strategy:

    Follow the Money.

  • “Other researchers found that they could not reproduce the result.”

    A bit ironic to summarize the three failed studies in this manner in an article emphasizing the importance reporting the facts and not opinion.

    Perhaps a more accurate and informative statement would have been:

    “Other researchers found that they could not reproduce the result when using different methods.”

  • I find this approach in Journalism refreshing.

    I’m a scientist, not a journalist really, but thanks anyway 😉

    Good for you if you may be less likely to jump to conclusions because of your science background, but the distinct impression you get is that’s not true of everyone.

    I can still point out, that additional causality studies will need to be shown.

    Absolutely. (It’s part of the reason for my last sentence in the penultimate paragraph.)

  • katieann,

    But as you say, the animal looks very different depending upon where you stand.

    Hmmm, not really. I didn’t really say much either way as I’m didn’t really write about XMRV, etc. itself; I did provide a few entry points for those that wish to red for themselves. (You’re having me say more than I did.)

    Follow the Money.

    Perhaps in (some) businesses, yes, but in science it’s: “Follow the evidence.”

    Just a word of caution: pointing to “the money” is a line often played as part of the “pharma shill” gambit. It generally proves to be a fallacy when applied to research, with a few (rare) exceptions (who get pretty harsh treatment from the research community).

  • S,

    Excuse my being a pendant for a moment 😉

    Accepting that your addition might add more context (which is fair enough):

    Other researchers found that they could not reproduce the result.

    is a statement (i.e. an observation, a “fact”), not an opinion, and adding words to narrow a statement cannot make the earlier statement false: the first statement has to be a superset of the latter and hence will be true too.

    More practically I would draw your attention to the preceding paragraphs that lead into my (intentionally) very concise take on the XMRV-CFS story:

    Often neither result is “wrong,” but rather slightly different (and valid) approaches show results that are at odds with eachother. This is frequently how new factors important to a story are uncovered.

    The resolution of conflicting results can be quite technical. The different results might be due to different techniques, contamination, differences in samples, and other factors. Resolving them usually requires a detailed understanding of the area of science involved.

  • Grant, You wrote:

    “‘Other researchers found that they could not reproduce the result’.

    is a statement (i.e. an observation, a “fact”), not an opinion, and adding words to narrow a statement cannot make the earlier statement false: the first statement has to be a superset of the latter and hence will be true too.

    More practically I would draw your attention to the preceding paragraphs that lead into my (intentionally) very concise take on the XMRV-CFS story:”

    I agree. My use of the term ironic wasn’t warranted. My apologies.

  • Under the heading of the world is not fair– In science, the reputation of the research body or individual carries disproportionate weight as to the ultimate validity of the work. The Cleveland Clinic put its full weight behind the conclusions of the XMRV researchers as regards prostate cancer. Any study by the Brits, Dutch that failed to find any XMRV was obviously flawed, deficient. The unusually strong comments by Dr. Alter, and the unusually strong credentials he brings to the topic, leads me to the conclusion I would have under any circumstances– There is an association between XMRV and chronic fatigue. As Alter said, there is no proof of causality.

  • The Wall Street Journal is now reporting that the papers by the National Institutes of Health and the CDC (Centers for Disease Control) which were accepted for publication in two different journals have been pulled by the US government Dept of Health and Human Services. They are reportedly on hold while their differing results are ironed out. This is so unusual, I’d be interested in hearing your take on it. Do you agree that this is the best way to handle such disputes?

    http://online.wsj.com/article/SB10001424052748703374104575337160225739290.html?mod=googlenews_wsj

  • Grant wrote: “Other researchers found that they could not reproduce the result.”

    As they did not use the exact same methods for finding XMRV as the WPI did, the studies were NOT replication studies. Fact.

    Helle

  • Joe & G. Lyon,

    Interesting news.

    I really can’t add much to what the WSJ article says, I’m afraid. I’m not familiar with US departments and administration and I have no access to the details of what is happening.

    For research that is only of interest to the academic community this would be unusual, as the WSJ article indicates. The administrators may feel strong public (and hence media) interests and consider responsibility for the affected members of the public as part of their job, and be concerned how the mixed findings, if not explained together, would impact on the affected members of the public. The WSJ’s paraphrased account of an anonymous researcher’s (or researchers’) thinking on the matter might suggest this is the case:

    “a researcher said the two teams were asked to put their papers on hold because senior public-health officials wanted to see consensus—or at least an explanation of how and why the papers reached different conclusions”

    (From the WSJ article Joe & G. Lyon linked.)

    Not very helpful I know; I’m more-or-less just echoing parts of the article, but the WSJ article seems what I would expect. Unless you’re trying to look for dramatic or “hidden” meanings in the way that tabloids or the like do 🙂

    Joe, re “odd”: While it is unusual, I wouldn’t jump for a “this is suspicious” conclusion in quite the way that some blogs are! (Not saying you are, just that I wouldn’t.) I’d look for ordinary explanations first. As the saying goes, when you hear hooves think of horses before zebras.

    G. Lyon: I wouldn’t start by interpreting this as being about “handling a dispute” (my emphasis) or “ironing out their differences.” When they write “an explanation of how and why the papers reached different conclusions” they are referring to research findings not a political debate or dispute in the common sense of ‘dispute’. One kinder interpretation would be that they want to make a statement that covers both sets of results that don’t confuse or mislead. (This would be consistent with considering they have a responsibility to the public, etc.)

    I haven’t answered if I think this is best approach. Sorry. I’m not sure this is the appropriate time, given this is a “live” topic affecting a lot of people, and it would be speaking ahead of events.

  • Helle,

    While it might read better using “confirm” in place of “reproduce” and/or “results” for “findings”, or other wording again, I believe I’ve made the intended meaning clear already 😉

    It’s usual for researchers to use alternative approaches that are expected to independently confirm previous findings through different approaches, rather than “just” to ‘reproduce’ step-for-step what previous researchers have done.

    Independent evidence from complementary approaches offers stronger support for a finding.

    Bear mind that my article isn’t really about XMRV, but the issues of reporting on-going studies; this discussion is a bit of a side-line. (But you’re most welcome to chat about it.)

  • Interesting article. In the case of CFS there are 2 distinct schools of thought. One is that CFS is a psychological disease. The other is that it is a physical illness. There are papers backing both sides. Researchers on both sides get money allocated to them based on which way this goes. People with CFS get treatment based on which way it goes. The initial finding of XMRV was from a group who favour’s the physical illness explaination.

    The papers not finding it were led by researchers who have made their career’s from saying it is a psychological illness. One of these papers actually used blood from people who were screened out from having any illness in the past six months showing that their replication attempt regardless of technique was set up to fail.

    In general most people with CFS feel that they have a physical illness. There are many papers to back this up regardless of XMRV being the root cause or not. However the treatment offered in most countries in based on the root issue being psychological in nature. The present treatment (CBT and exercise) being offered has even been shown to be harmful to the patients in recently published studies.

    In this specific case of these papers, the CDC has a historical position of backing the psychological cause with research money and public statements. When the initial XMRV paper was released the head of the department at the CDC said that he didn’t expect to find XMRV before he had even done any testing, therefore showing his bias. How the CDC was directing its money regarding CFS actually ended up being investigated by the senate due to this bias. The fact that the CDC announced before testing started that they didn’t expect to find XMRV and then didn’t is no surprise.

    Your theory on how science works assumes good faith on the part of the researchers addressing the issue at hand. There is clearly documented history of bad faith with CFS which is why the patients are so upset.

  • Interesting article.

    Just a reminder to readers that my article isn’t “about” XMRV, CFS or any potential relationship between them. It is about issues in reporting on-going stories, i.e. science communication issues.

    Commenters — as they frequently do — have chosen to write about something they want to write about, rather than what the article is about 😉 You’re welcome to chat about it, but remember that’s your topic, not mine!

    Researchers on both sides get money allocated to them based on which way this goes.

    Researchers don’t “just get money” just because a result when “went some way” 😉 Although I am sure some researchers wish money would just arrive like that 🙂

    With rare exceptions science is done using short-term funding on a competitive basis, with researchers having to apply for new funding regardless of which way their current research pans out.

    Sure, if it’s a hot topic and their work is leading the way they’re more likely to be successful in the next run of grant applications, but then so they should. They still have to apply for the money, though. I doubt they “get money allocated to them based on which way this goes”. Research money isn’t dished out like that 😉

    One of these papers actually used blood from people who were screened out from having any illness in the past six months showing that their replication attempt regardless of technique was set up to fail.

    Without having read the papers (I’ve haven’t time, and the topic isn’t of enough interest to me), an obvious reason would be to rule out contamination from recent infections, reasoning that CFS should arise from a long-term infection, assuming it has an infectious cause.

    In this specific case of these papers, the CDC has a historical position of backing the psychological cause with research money and public statements.

    I’m not familiar with the details, but this strikes has having elements of a conspiracy theory or urban myth that’s doing the rounds. (The ‘net is like that unfortunately.) The CDC is the Centre of Disease Control; they have a lot of experience of looking at diseases, i.e. infectious illnesses.

    In general most people with CFS feel that they have a physical illness.

    What people “feel”/believe/have-a-hunch doesn’t count for a lot in science I’m afraid. Anecdote and intuition is a terrible way to resolve factual issues. It’s vulnerable to all the human factors. (These are one of the reasons for developing scientific methods.)

    The fact that the CDC announced before testing started that they didn’t expect to find XMRV and then didn’t is no surprise.

    Scientists often have a feeling of what is likely based on having a deep knowledge of an area. It is a bias, but one based on previous knowledge, but not the kind of bias you are presenting.

    Your theory on how science works assumes good faith on the part of the researchers addressing the issue at hand.

    I’d rather speak for myself, thank you, and if I did write about “how science works” It wouldn’t be my “theory on how science works” (note emphasis). I am a scientist, not an outsider speculating or hypothesising how science works 😉

    (The word ‘theory’ isn’t used this way when talking about science, by the way.)

    I pointed out that media need to not treat each paper as the last word. Your statement would have me to taking individual results as “definitive” on their own in a way that I pointed out isn’t really done. Science doesn’t, not because of the potential for fraud, but because in practice science works on the literature as a whole not any one paper (or a handful of papers), a point I made in my article.

    Mistakes do happen, as do unexpected results. The literature as a whole overcomes these over time. It’s one of a raft of reasons why rapid “blow-by-blow” reportage can be a nuisance; it doesn’t give time for any (innocent) issues to be resolved or look to the larger picture (“the state of play”).

    Just a friendly poke: objections of the “dishonest” kind have been made about the WPI, which you could have mentioned 😉 If you’re going to accuse one party, accuse them all equally, etc.

  • In general I agree with your article and how the media could better handle science stories. I also think that your response to me somewhat ignores the effects of competition for a scarce resource on people behaviour.

    Your point: Researchers don’t “just get money” just because a result when “went some way” 😉 Although I am sure some researchers wish money would just arrive like that 🙂

    Doesn’t really make sense or reflect reality. If your entire career was tied up in the assumption that disease X was caused by a psychological condition and someone came along and proved beyond a shadow of a doubt that it in fact was a result of a genetic condition I am willing to bet that further studies into how disease X is related to childhood trauma would most likely not be funded.

    “reasoning that CFS should arise from a long-term infection, assuming it has an infectious cause.”

    I realize that you don’t have any background here but CFS patients have compromised immune systems. If you look in blood from people who aren’t getting sick you aren’t looking at CFS patients. The original samples in this case came from a study published in the journal of psychosomatic research.

    Finally, you mention that scientists often have a “feeling” or bias based on deep knowledge. Aren’t research dollars handed out by scientists? Again going back to how humans actually function, if you are reviewing a bunch of research proposals are you likely to fund the ones based on your bias or the ones that go against it.

    The fact that the CDC was showing bias in handing out money to CFS research is not an urban myth but a fact. The office of the inspector general did an audit of the program and found that 39% of the money allocated for CFS research was re-directed into other projects not related to the illness.

    http://oig.hhs.gov/oas/reports/region4/49804226.pdf

    The WPI has released all sorts of statements to the press that were unhelpful and breeched normal scientific standards. The “other side” has also engaged in practices not normally seen in science. How often would the BMJ rush a non-peer reviewed article into print and include an editorial praising its science when in fact it was using samples that made no sense.

    The actual scientific truth and the patients with the disease are who are losing out as a result of all this unprofessional behaviour.

  • Michael,

    I’m not really interested in providing a defence to your pet conspiracy 😉

    As I wrote, this isn’t my topic or my interest. It’s yours.

    Rather than focus on portraying people* or institutions, etc., in a particular way, you might instead take the lead of scientists and focus on the evidence; you’re effectively trying to shoot the messenger rather than look at the messages. (I’m unlikely to spare them time, though; I’ve a lot to do.)

    Doesn’t really make sense or reflect reality.

    It accurately answered to you wrote and I quoted to make clear what I was replying to: “Researchers on both sides get money allocated to them based on which way this goes.” No, they don’t get hand-outs because results went some particular way.

    You now present a different scenario: an imaginary career hung on a solitary point of view, painting a doomsday scenario for them if the idea proves wrong.

    You’ve left out that people can simply apply work on something else in their area of expertise, which researchers routinely do.

    It’s the norm for the focus of people’s research to move as new results comes in. They don’t “have” to keep working on a particular question. Ideas prove wrong all the time in science; researchers work with that and it doesn’t mean an end to their careers.

    (It’s unlikely any reasonably large group would have all their eggs in one basket anyway; most groups have several things on the boil.)

    The audit you refer to is 12-15 years old. The current fuss is less than a year old.

    * Including me. You have, for example, painted me as ignorant of the basics of this story. (Looks like trolling from here.)

  • Grant – You used the example of XMRV in your story.

    It seems to me that you are backing down when other people respond to your own example.

    Helle

  • Helle,

    You used the example of XMRV in your story.

    As an example of an unresolved story in the media, but not about the science of XMRV itself.

    The XMRV story itself wasn’t “the story” in my article. How media deal with on-going science stories was.

    The particular example I choose isn’t especially important; it’s just what prompted me to write about a wider issue.

    If that’s not clear to you, I can empathise, but it’s not a case of me shifting positions or backing down, etc.!

    I thought I made it clear when I wrote that:

    “I’m not going to discuss the details of the science in the XMRV-CFS story, other than to say it is still an unfolding story and one that ideally should be presented by a virologist. The footnotes contain some links for those that are interested.***

    My focus here is on media reporting, in particular how new research findings are presented.

    Regards:

    It seems to me that you are backing down when other people respond to your own example.

    Commenters brought up the science and other “issues”, not me. The footnote provides links to other sites for those not interested in the media issues.

    Finger-pointing at various institutes, etc., while interesting as a side-line, haven’t anything to say about the kinds of questions an interviewer might ask, how they might verify if a science story has yet to be resolved, and so on. My post was target at the science writing / journalism community, not CFS patients or advocates.

    The opportunity for discussion on the intended topic has almost certainly gone some time ago.

    I can live (and have been living) with that. I’ve allowed visitors the courtesy of discussing side-topics among themselves (with me joining in where I think it is appropriate).

  • I have tried to stop my subscription to emails from this discussioon 4 times – at least. Could you please make that happen for real ? Thank you !

    Helle

  • It should be pointed out that this blog was linked on a Facebook page and characterized as a ‘blog about CFS’ when that was obviously a distortion. This was done by the CFIDS Association Of America, an outfit that has a mixed reputation among CFS/ME/CFIDS patients, partially because, as in this case, they tend to take swipes at Whittemore Peterson Institute, for instance. But that’s another tangent to what it is you’re trying to get across here.

    Here are two examples of blogs that both cover this in a way I’m guessing you think may be inappropriate. They approach the issue from two different vantage points. They seem to be written by bloggers with experience in medical research, at least as opposed to patient bloggers. I am curious what you think of these relative to your overall point here, though of course these are blogs and not prominent media publications like the Wall Street Journal.

    An epidemiology blog:

    http://relative-risk.blogspot.com/2010/06/chronic-indecision.html

    A virology blog:

    http://www.virology.ws/2010/06/30/publication-of-xmrv-papers-should-not-be-blocked/

    Thank you.

  • Helle,

    I don’t run sciblogs I’m afraid. Try using the contact form on the main page. It may be that it takes a day to activate?

    If it’s any consolation the 20-odd comments over several days is a drop in ocean compared to the email I get. Chances are comments from here will die out soon enough anyway. (Typically blog comments peter out after 2-3 days.)

    Just to be clear to other readers: people are quite welcome to write about CFS, even it wasn’t the main subject of my post.

  • Three Chord Monty,

    OK, now you’ve got to explain the name… Three Chord Monty? 🙂

    (Nothing to do with the Pythons?)

    It should be pointed out that this blog was linked on a Facebook page and characterized as a ‘blog about CFS’ when that was obviously a distortion.

    Ah, thanks for that.

    Yes, this wasn’t really meant to be about XMRV specifically, but the more general issue of reporting scientific stories that haven’t been resolved. But having mentioned XMRV, I guess I get the fuss that comes with it.

    While most comments are OK on the Facebook page I looked at, statements like “with a dollup of thinly veiled insults” make me out to be doing more than I have… They’re par for the course from some, I guess :-/ (Sigh)

    Ideas that I’m asking that media hold off until it’s all done and dusted are wide of the mark too. (I asked that they present the current state of play, not that they say nothing. If this isn’t done you can get a ping-pong effect with different results confusing or misleading readers.)

    For what it’s worth, I linked to the second blog you cite in my Footnote.

    What do I think about the remarks from those two blogs?

    More-or-less what they say, with the catch that I’d want to know more about why the papers are being held up first.

    Publication of scientific results (meaning all articles, not just the two being held up) should usually go ahead unless there are exceptional reasons. The “unless there are exceptional reasons” is the catch…

    Without the full picture I’m not sure it’s fair or wise of me to make a call on it, hence my previous cautious take on this. (We don’t have links to comments here unfortunately. Try searching the page for ‘Joe & G. Lyon,’)

    IF presenting a unified front for both papers is their only concern as a compromise perhaps the HHS could draft a statement targeted at journalists (note, journalists, not scientists) and ask that the scientific journals carry this along with the papers?

    Sorry this isn’t very helpful, but I just don’t know the details.

  • Just a heads’ up for those interested in XMRV & CFS, the CDC paper is out: http://www.retrovirology.com/content/7/1/57

    Their conclusion:

    “We did not find any evidence of infection with XMRV in our U.S. study population of CFS patients or healthy controls by using multiple molecular and serologic assays. These data do not support an association of XMRV with CFS.”

    Reports indicate that the FDA paper (sent to PNAS) is still under review. (I’m not seeing it on the PNAS website, consistent with this.)

  • Readers interested in XMRV-CFS might like to read ‘ERV’s take on the recent publication (yes, no, yes) fuss.

    She points out a few things about the different ways of reviewing papers in PNAS that she considers might explain why PNAS is taking a second look at the paper (PNAS’ academy member review process has always been a bit of an unusual feature and a topic of discussion over the years.)

    She also reviews the CDC paper. Head over there to read the details, she concludes: “They used the same definition of CFS (1994 CDC Fukuda Criteria) as the Science paper. They used the same PCR conditions. They had two different labs blindly double check their findings two different ways. They couldnt find XMRV in healthy blood donors to an appreciable degree, […]”

    http://scienceblogs.com/erv/2010/07/xmrv_and_chronic_fatigue_syndr_15.php

  • “Readers interested in XMRV-CFS might like to read ‘ERV’s take on the recent publication (yes, no, yes) fuss.”

    Is this the same ERV that has referred to one of the authors on the Science paper as a ” gigantic f**king c**t,” and a “deceitful, conniving, gigantic f**king c**t”?

    If so, not exactly my kind of dispassionate science. I’ll pass.

    Instead, I’d suggest that your readers check out today’s post by Susan Vernon. Ph.D, Research Director of the CFIDS Association. Dr. Vernon worked at the CDC before joining the CAA and she’s very familiar with the CDC’s methods:

    Getting Blood From a Stone

    “Further, the samples from these three study cohorts were collected using different types of tubes, each of which has a distinct way of being processed. As if this weren’t bad enough, none of the blood tubes used were of the same type used in the Lombardi study. (They used tubes containing sodium heparin that are intended for use with virus isolation). The blood tubes from the 18 Georgia registry patients are designed to collect whole blood and preserve nucleic acid; it is not clear where the plasma came from for these subjects since plasma cannot be obtained using these blood tube types. So the explanation for not finding XMRV in these samples is simple – this was a study designed to not detect XMRV using a hodge-podge sample set.

    Detecting XMRV is hard. Replication of the Science paper will be hard because of the exacting methods required and because of the heterogeneity and complexity of CFS. Regardless of the outcome of any single study, it is critical that a valid replication study be designed and implemented by multiple laboratories, using standard and optimized techniques and testing split samples collected appropriately from adequate numbers of well-characterized cases and controls. Studies such as this one from Switzer, et al., continue to absorb time, divert precious resources and fuel controversy instead of consensus.”

    http://www.cfids.org/xmrv/070110study.asp

  • “She also reviews the CDC paper. Head over there to read the details, she concludes: “They used the same definition of CFS (1994 CDC Fukuda Criteria) as the Science paper. They used the same PCR conditions. They had two different labs blindly double check their findings two different ways. They couldnt find XMRV in healthy blood donors to an appreciable degree, […]”

    And no, they didn’t use the same definition. All of the subjects in the Science paper used the Canadian Consensus Dx Criteria AND the 1994 Fukuda Criteria (assuming provisions for their conflicting aspects). The CDC study used only the Fukuda criteria. The Canadian Criteria are significantly more selective than the Fukuda criteria. If strictly adhered to, the two definitions are mutually exclusive. The CDC states that “The physical findings in persons meeting the Canadian definition may signal the presence of a neurologic condition considered exclusionary for CFS (as defined by the CDC)”. As you can see, the CDC paper went to great lengths to insure that it was understood that this was a possible explanation for the differences in the study results.

    The Lombardi et al. study specifies that samples were selected from patients fulfilling the 1994 international CFS case definition [23] and the 2003 Canadian Consensus Criteria for CFS/ME [25]. Lombardi et al. did not specify if patients were evaluated for exclusionary conditions, or if the study subjects met both definitions, or which patients met either CFS definition. The 1994 International CFS case definition and the Canadian Consensus Criteria are different and do not necessarily identify similar groups of ill persons. Most notably, the Canadian Criteria include multiple abnormal physical findings such as spatial instability, ataxia, muscle weakness and fasciculation, restless leg syndrome, and tender lymphadenopathy. The physical findings in persons meeting the Canadian definition may signal the presence of a neurologic condition considered exclusionary for CFS and thus the XMRV positive persons in the Lombardi et al. study may represent a clinical subset of patients [11].

    Did ERV even read the CDC study?

  • S– Curious how you dont link to me saying that.

    Wonder why?

    Lying by omission is still lying, ‘S’.

    Im assuming you will follow common blog etiquette and not derail this fellows post further.

  • S,

    ERV has a lively writing style, she’s known for it, but that doesn’t make her take on the science invalid. You quote isn’t fully representative; her writing isn’t “all swearing” in the way that other readers might take from how you present it 😉

    (S’s selected quote is from a different article than I linked. See link in ERV’s reply.)

    On the same general theme, phrases like “using a hodge-podge sample set”, “fuel controversy instead of consensus” (From Vernon’s words you cite) push one point of view over the other rather than promote “dispassionate science”. She is writing as a spokesperson for an organisation. Just a thought.

    You object to swearing, I look askance at loaded language 🙂

    If you have trouble with who is saying what, you’d be better to look to independent virologists, like (just as one example) http://www.virology.ws/ It’s the reason I linked to these in the Footnotes after all 😉

    I believe ERV has already replied regards the selection criteria some time ago on her blog. If I was cheeky, I’d ask if you have even read her blog 😉 (I am kidding there.)

  • @ ERV – “Lying by omission is still lying, ‘S’.

    Im assuming you will follow common blog etiquette and not derail this fellows post further.”

    Lying? I didn’t claim any context. Your words spoke for themselves regardless of the context.

    “Im assuming you will follow common blog etiquette and not derail this fellows post further.”

    As for derailing his post, I was trying to save him from himself. He was posting and linking to your misinformed comments.

    Grant, I agree with your recommendation of Virology Blog as a good example of an independent virologist. I’ve ling enjoyed Dr. Racaniello.

    As for reading ERV’s blog, been there done that. Nothing really worth the time or aggravation.

  • I’ve ling enjoyed Dr. Racaniello.
    Until he says something remotely critical about XMRV, at which point you will stop ‘ling’ him and start ‘reading’ him, apparently.

    Since you have such a problem with me, Im assuming then you either a) have evidence in hand that the British group accepted bribes to commit scientific fraud, or b) have no problem with high profile principle investigators accusing other PIs of bribery, conspiracy, and fraud without evidence (with no evidence ever surfacing).

    If its a), put up.

    If its b), I dont think anyone should really be taking ethics tips from you, however aghast you are at people using *NAUGHTY WORDS*. Naughty words and opinions are first amendment rights here in the US. Libel is not. Judy is very, very lucky she only got implied as a naughty word by a random blogger, and wasnt sued into oblivion in the UK.

  • S,

    Your words spoke for themselves regardless of the context.

    You appear to be trying to “encourage” people not to read the article I linked to by shooting the messenger. Furthermore, as I pointed out earlier, you are objecting to a different article than I linked to.

    I would encourage you to let readers judge for themselves. I don’t use the same choice language, I’m no prude either, but it’s just a writing style in the end. The context (in a question or statement, the message of the paragraph, etc.) and why she described the person as she did are things others can judge for themselves.

    As for derailing his post, I was trying to save him from himself. He was posting and linking to your misinformed comments.

    I’ve already pointed out “but that doesn’t make her take on the science invalid.”

    Also, it‘s bit patronising (to put it mildly) to write that I need saving from myself. I can look after myself, thank you. And speak for myself, too 😉

    Aside from ERV’s article a wider derailing is that of commenters writing about XRMV-CFS and not media issues. (The latter being what I wrote about.)

    None of the commentary has been about what I wrote, really. I can live with that and people can comment, but I’d prefer people not have me saying things I didn’t 😉

    While I am on this subject, the CAA (CFIDS Assoc. of America*) “directed” people here, saying my article was about a “perspective on the recent media coverage of evolving XMRV research in CFS” but as I said to Michael “this wasn’t really meant to be about XMRV specifically, but the more general issue of reporting scientific stories that haven’t been resolved.”

    * The same organisation Vernon is representing in your earlier quote.

  • Grant,

    “While I am on this subject, the CAA (CFIDS Assoc. of America*) “directed” people here, saying my article was about a “perspective on the recent media coverage of evolving XMRV research in CFS” but as I said to Michael “this wasn’t really meant to be about XMRV specifically, but the more general issue of reporting scientific stories that haven’t been resolved.”

    You wondered off topic. Had you stayed on topic we wouldn’t be having this conversation. You posted a quote by ERV that was at best incomplete and at worst ill informed, in an attempt to educate your readers. Then I get accused of not getting the full story because you omitted her clarifications?
    Many of the readers you were trying to inform were quite possibly coming to your site from the CAA’s. These are exactly the group that would be highly offended by ERV’s abusively ‘colorful’ style and openly hostile attacks on anyone that dares question her.

    The CAA is well aware of ERV’s personal bent (dare I say biases?) in all of this. I wouldn’t be the least bit surprised if the CAA was that they are rethinking their decision to link to your site.

    My comments were intended to give your readers a heads up as to where they were being directed. As for making up their minds, they are now more than free to spend the day with ERV chatting about the finer points of CFS research but they’re not heading off into what many consider a hostile environment unaware.

    @ ERV. As for the “ling” thing. The ‘i’ is right next to the ‘o’ on the keyboard. Apparently ling isn’t picked up with the spell checker. I missed it. I apologize. …ling enjoyed… – … long enjoyed… Pretty weak. I’d suggest you go after me on a more substantive point.

    Are we done?

  • S,

    Posting a link is not “wandering off topic”. (It is encouraging people to read elsewhere not asking for conversation here.)

    The “off topic” line of conversation you refer to was already set by other commenters (including you), not me.

    Nor it is something I have to defend.

    What you quote has nothing to do with my linking to ERV. It explains that the CAA (for whatever reason, innocently or not) misrepresented what my article was about, and that this is a likely reason why the (entire) comment thread is off the original topic.

    People can see where they are being directed in links anyway; web browsers have status lines, etc, etc. and others are quite capable of looking after themselves really (i.e. I’m not buying your excuses).

    No more commentary on the subject my link to ERV’s post, please.

  • This comment is to ‘Phoenix Rising’ and ‘The CFIDS Association of America’ Facebook authors. If readers could past these along I would appreciate it. I don’t have time (nor want to) join Facebook groups I won’t follow.

    To ‘dean’ of ‘Phoenix Rising’:

    (See: http://www.forums.aboutmecfs.org/showthread.php?0&p=97095)

    It is customary to quote a portion of an article then provide a link to the original, not to copy the entire article.

    In addition to what is customary practice, many articles will be copyrighted. You will avoid trouble with copyrights if you limit yourself to quoting the first portion or a representative quote. If you wish to repeat the entire content, or substantial parts of it, the correct — and polite! — thing to do is to ask the author or publisher. (For future reference, articles on sciblogs are copyright the author and the SMC unless the author “frees” them under a commons licence or the like.)

    I said nothing about policies! Introducing my article with “one study doesnt policy make, much less one press release…..” does not describe my article. (I’m not saying I disagree with the point, but that is it is not what my article relates to.)

    To many “the interpretation of scientific information” would mean how to read scientific papers, which is a different meaning to what I think you want. (Certainly it would be a different meaning to what I wrote.)

    To the editor of the CAA Facebook pages and the 20+ commenters who replied:

    (See: http://www.facebook.com/CFIDSAssn)

    To the editor:

    You presented my article as being about a “perspective on the recent media coverage of evolving XMRV research in CFS.”

    It wasn’t about XMRV-CFS specifically, but more general issues of reporting scientific stories that are on-going.

    It was addressed to journalists, science writers, etc., not patients and advocates for those with CFS.

    To the commenters:

    I can’t reply to them all. (Too many!) I’ve repeated some stuff form elsewhere to have it in one place.

    I suspect some readers have skimmed my article with the idea that it is about “perspective on the recent media coverage of evolving XMRV research in CFS” in their head, which might explain some people’s confusion. (See comment to editor, above.)

    Jay Spero: Your first paragraph is well off the mark 🙁 Fortunately for me 🙂 (It happens, I know.) Your second paragraph is fine.

    Tina Tidmore: You wrote “if that is the case, then the system is not serving the public”. Scientific journals serve scientists, not the public. There are reasons publication takes time in science. Sometimes it even takes a year. (I’ve heard of longer, too.) Many scientists would like faster publication, too, but not at the expense of lower standards. If you read around you’ll find many many words written about all of this. I may write a blog article looking at some of this. Comparing it directly to journalism isn’t useful as it’s very different.

    Erik Johnson: I did not “perfunctorily dismiss “follow the money” as conspiratorial-thinking when the evidence points directly at the money trail.” Your second paragraph adds to the error of your first.

  • […] XMRV – the virus that has or has not been linked to cause chronic fatigue syndrome – is stirring up headlines again. Heidi Ledford at Nature reports on the CDC’s decision to delay the publication of a new study, following the emergence of conflicting results elsewhere. And Grant Jacobs at Code for Life uses this as a case study for context in science journalism. […]

  • Your comment that the CDC has considerable experience with infectious disease is correct. However, a quick review of the research done by the CFS Research Program shows that their research, at least when it comes to CFS, focuses primarily on the psychosocial side teaming up with the Emory University department of psychiatry, despite biomedical research done by outside researchers. The research is publicly available. If you check the CDC site, you will notice that the XMRV link actually takes you out of the CFSRP site. Other than the former head of the CFSRP, no one else from the CDC CFS team was included as an author in Switzer et al.

    And I’m sure your comment about urban myths was meant to soothe rather than an actual investigation on your part – as you note neither CFS nor journalism are your specialty. But, reputable journalists have investigated and reported on the situation and many reputable scientists have have spoken out as well. Here are some links to help you get started.

    The IACFS is the world’s largest group of biomedical and behavioral experts on CFS and they have called repeatedly for CDC research into biomarkers, more research regarding all the viruses that are associated not just XMRV which was not done by the CFS lab and a change in management. (www.iacfs.org).

    Jim Walls, former head of the Atlanta Journal Constitution’s investigative team, writes about it occasionally on his investigative journalism site.

    http://www.atlantaunfiltered.com/2009/10/28/advocates-where-was-cdc-for-milestone-in-chronic-fatigue-syndrome-research/

    Dr. Reeves transferred to a mental health surveillance unit some months ago. Interesting position for a virologist.
    http://www.atlantaunfiltered.com/2010/02/05/cdc-reeves/

    The CDC’s position regarding CFS has been the focus of other investigative journalists and two books by journalists – Osler’s Web being the most prominent. Her book was funded in part by an investigative journalist’s fund and was based on both interviews and FOIAs.

  • More about journalism. A copy of the 1996 PrimeTime News interview with the investigative journalist who wrote Osler’s Web and others is available.

    It should be noted that NIH researcher Stephen Straus did research on EBV during the 1980s that supported the hypothesis that EBV was responsible for a neurological type disease. The reporter, Nancy Snyderman, says that EBV was ruled out.

    This is not quite accurate. What is accurate is that EBV was not found in all subgroups. Government scientists who did not find it ruled it out, extramural scientists whose tests were positive did not.

    Since 1996 some scientists have continued to find positive associations between CFS and as many as 10 different pathogens. But science takes money and without money it is difficult to move forward. And the CDC apparently blocked those funds they had access to.

    In 1998 the United States GAO investigated the CDC for misuse of CFS funds. Rather than being fired, then head of the CFS research program, like Bill Reeves who followed him, was simply moved to a different unit.

    The misused funds were restored, however, very little of the research focused on viruses or biomarkers that would help sort out the various subgroups of patients and possible non-patients.

    The DHHS scientific advisory group for CFS has repeatedly called for this to change. Out of 100 diseases the NIH lists as funded CFS is literally at the bottom of the list. It should probably be noted that many of the scientists on the NIH grant review committee for CFS have never even done research on CFS or any infectious disease for that matter.
    .
    http://www.rescindinc.org/primetime1996.wmv
    (Warning it takes forever to load.)

  • To those who have written privately:

    I appreciate the effort in writing (those were long comments!); I’m afraid I won’t have time for replies, as I’ve too much on my plate.

    I’d like to take the opportunity to point that unless there is a genuine need to address me privately, I prefer people write to the comments thread. I realise some of these issues have rather “robust” commenters, but I prefer open discussion to effectively going around the blog.

    (I do prefer people point out straight-forward errors such as typos privately, as it gets my attention quicker, but things that like interpretations of others’ material are better sent to the forum.)

    I would offer to transfer your message to me to the comments (with any private bits removed) if send me a short note (giving an alias if you want one), but I see that you have cc’d yourselves, so you should be able to put these up with a little cut’n’pasting yourself 😉

  • A few follow-ons, in case anyone at all is still reading this! –

    Although nominally about the embargo issues, this also contains a summary of the science:

    http://embargowatch.wordpress.com/2010/08/23/pnas-lifts-embargo-on-virus-chronic-fatigue-syndrome-study-after-break-but-the-real-story-is-the-studys-delayed-publication/

    ERV has her say on the PNAS paper (the discussion is worth following):

    http://scienceblogs.com/erv/2010/08/xmrv_and_chronic_fatigue_syndr_16.php

    Casey Johnston at ArsTechnica summarises the paper (you might prefer a critique of the paper rather than reportage of it, though):

    http://arstechnica.com/science/news/2010/08/is-there-a-chronic-fatigue-virus-researchers-cant-agree.ars

  • Just a couple of comments from a journalist. Your original premises are sound. And although there has been some very good journalism about science, health and medicine in general as well as your example, there is also some very bad stuff out there. Make sure you are linking to a legitimate news source if you are referring to journalism.

    Also, at least in the United States, most journalistic training involves the field of health, but not medicine. Many journalists don’t know enough about medical science and/or viruses to ask good in-depth questions. Nor are many trained to deconstruct research so they have to rely too heavily on sources with vested interests regardless of whether they are psychosocial or biomedical.

    Rather than judge who is right and who is wrong, journalism attempts to provide balance and accurate, reliable facts in meaningful context hopefully using original sources.

    You commented that stories based on embargoed press releases are not as thorough. That is the nature of the beast. Like any other business, journalism is highly competitive and journalists don’t keep their job long if the competition is always beating them to the story. But, good journalists often do what is referred to as second day stories. These often contain the more in-depth coverage you are seeking although you will see that less and less because reporters are spread too thin while also being expected to stay on top of the next days occurrences.

    Your follow-ons regarding this post are indeed interesting, but ERV is not in any way shape or form a journalist. Hers is just another opinion. Although he did not post on this particular paper, Vincent Racaniello’s award winning blog on the peer-reviewed literature in the world of virology is far more balanced and professional.

    As a journalist, if I were looking for top experts I would not choose a post doc student no matter how interesting. Sorry, but that is the way the field works. Works that way in science also.

  • KAL,

    Thanks for writing. I (already) appreciate what you’re saying, but I disagree in important ways with some of it. The underlying problem is, for the most part, a lack of investment in specialist services in the media (which I suspect you’d agree with).

    Make sure you are linking to a legitimate news source if you are referring to journalism.

    Small warning/poke: some argue journalism is not the institution that hosts the material, but the practice of doing it, in which case what matters is not “linking to a legitimate news source” in the sense of a recognised newspaper, etc., but if the person is clearly working in a thorough “journalistic” way. As a counterpoint consider that there are some pretty shoddy efforts within otherwise reputable institutions. If you look to the individual piece you can toss them.

    Rather than judge who is right and who is wrong, journalism attempts to provide balance and accurate, reliable facts in meaningful context hopefully using original sources.

    I appreciate what you are saying, and excuse me for saying this, but this can also be used to excuse a lack a specialist writers. The problem, as I and many others have written about, is that this runs into making science journalism a balance of opinions. That approach might be fine for subject matter that rests on opinion, it does very poorly on subject matter that rests on what is known. You might be interested in these earlier posts I wrote (there are some ones from those early months of my blog if your browse back):

    https://sciblogs.co.nz/code-for-life/2009/12/31/media-thought-ask-what-is-known-not-the-experts-opinion/
    https://sciblogs.co.nz/code-for-life/2009/10/23/science-journalism—critical-analysis-not-debate/

    These often contain the more in-depth coverage you are seeking although you will see that less and less because reporters are spread too thin while also being expected to stay on top of the next days occurrences.

    I sympathise and in a limited sense agree, but why run the barely modified PRs as news on the first day at all? It’s not journalism, really, as you’re basically just repeating what’s been stuck on the desk sourced from one player. An obvious reason to would be competitive business, wanting to be out the door first, rather than good journalism. (Note the switch from business to journalism.) Don’t forget as a business, news is about selling copy, with all the ills that brings. (I can be another thing for writers.) A problem with releasing something sloppy on day one, is that once news is out one way, it’s hard to correct the ideas of readers. And if you do, they get irritated with the changing positions, and fair enough too!

    ERV is not in any way shape or form a journalist

    So? I never said she was. Please note I introduced her in the context of not my article (which was about the journalism issues), but the side-line discussion others took up about the science.

    Please also note that I did offer Racaniello’s blog in the comments, too. Trying to give one credence over the other using “award-winning”, etc., is so-so: it the specific content of the individual article that matters. It’s the same critique put on scientific papers, one that I’d hope science journalists/writers understand.

    Could I suggest you might be confusing style and substance, as many others seem to be? ERV’s style is very distinctive and I know it rattles some people, but that’s not the substance of the science she’s describing. I’m getting more than a little weary of people trying to slate me for someone whose style they don’t like; if you don’t her style, don’t read her posts.

    Hers is just another opinion.

    Hmm, yes-and-no. Yes, in that everyone’s opinions, “top expert” or not, are opinions. No, in that she will have more background on virology, and the experimental methods used, than your average person on the street.

    As a journalist, if I were looking for top experts I would not choose a post doc student no matter how interesting. Sorry, but that is the way the field works. Works that way in science also.

    I sense you are ending by trying to hang a “poor choice” on me, perhaps because you have a personal dislike of what ERV has said in the past (sorry to be blunt, but it does seem to be a pattern of quite a few people interested in XMRV).

    Firstly, it hangs “looking for top experts” on me. Where did I say I was doing this? I didn’t. (I am not saying I think her views unworthy by dint of her being “only” a post-grad, by the way.)

    Her blog says up-front that she’s a post-grad student: readers can bear that in mind for themselves. It’s clear enough for anyone to see to my mind. (Not a post-doc student, by the way, that’s strange misnomer: post-docs aren’t students.)

    While we’re philosophising about this, which is to say, I’m not writing about “ERV” here, but wider issues: for scientists, the titles matter less than what is said.

    Journalists/media look to “top experts” not just for their knowledge but if anything more for the “authority” their titles bring. A quote is apparently stronger for the title the person has, rather than their knowledge per se. Way of the world, perhaps, but it’s a bit of a fallacy too.

    Science works on the basis of what is known, not what title people hold. Media like titles as it gets around having to convince the audience/readership that the person they cite know their patch through their words. The issue there is not about knowledge, really, but credibility in the eyes of an audience/readership who don’t know the field.

  • Some journalists work from press releases most don’t. Professionally speaking most think they are a starting point nothing more. In general, most people who complain are angry that the journalist in question didn’t write what they wanted them to write.

    I understand that you do not like the protocol for balance in journalism, but using XMRV as an example, even there science is mixed – yes there is, no there isn’t. Contacting sources on both sides of “what is known” is a journalist’s job otherwise what is written is a press release. I’m sure you would agree that what is known in science is often dependent on the source, the time frame and the ideology.

    Scientists disagree all the time or so Abbie tells me. (As for whether ERVs blog is award winning if it is she has never mentioned it. On the other hand, Dr. Racaniello’s blog won Best Blog – Clinical Research 2010. Research Blogging Awards honoring outstanding bloggers who discuss peer-reviewed research. Have to go with what is known you know. As a microbiology professor at a top university I’m pretty sure he knows a fair amount about virology himself. But I’m sure you checked that for yourself. I was quite specific that I like his blog because it is professional and balanced.) I think you are confusing authority with credibility.

    And yes, Abbie’s sophomoric potty mouth is distinctive – as a journalist I talk to many researchers, more than a few of whom are virologists, and she does stand out for that reason alone. I really couldn’t care less what she says about XMRV. Your assumption is incorrect.

    I do beg your pardon for misspeaking when my fingers got ahead of me and typed post doc rather than post grad.

    Glad you welcomed my feedback! Time to move on.

  • I understand that you do not like the protocol for balance in journalism, but using XMRV as an example

    I didn’t say I didn’t like it outright, I pointed out it’s inappropriate for some things. (And what’s with “protocol”, trying to dress it up?)

    I think you’re missing my point, too. The “media balance” I refer to is about balance of quotes from different “sides”. The resolution of — or illustration of — issues based on evidence cannot come from quotes of “opinions”, but from what is known.

    “He said, she said” quotes in themselves are very unlikely to inform people of much more than just saying “this is an unresolved issue”, and it’d be a lot simpler to say just that. What will inform them more are reasons why it remains unresolved, the science.

    In the end, it’s not ‘who said’ that matters, but ‘what is’.

    the ideology

    Your addition, not mine, but I’d point out that ideological issues are more usually with non-scientific issues and approaches.

    As for whether ERVs blog is award winning

    I never said it was. Why are you still harping on about this? It does seem to matter a lot to you. If you don’t like her style, just don’t read her blogs. There’s no sense in whingeing to me about that! 🙂

    I did not doubt the standing of Racaniello or his blog (for goodnesses sakes I recommended it, as I pointed out to you). I explained myself clearly earlier, read back. Sure you can prefer his blog — go ahead, I never said otherwise — but you can’t reverse the logic to dump on someone.

    I think you are confusing authority with credibility.

    Please, I’m not silly. If you don’t get the distinction, that’s fine, but I am not the least confused.

    And yes, Abbie’s sophomoric potty mouth is distinctive

    Writing “and yes” is making me out to have said something that you agree to: I didn’t say that. I believe I explained this earlier in the comments. (Haven’t time to check.) By style I refer to her use of *blink*, text-speak, etc. That her style is distinctive doesn’t itself dismiss what she says about the subject, it’s just her way of putting it out. You’re a writer: writers adopt styles to connect with different audiences.

    Don’t care for da rap. Dats a style. If msg be OK, I’m cool with dat bit. Geddit, bro?

    If you don’t like her style, fine, but why keep bothering me with that?

    Your assumption is incorrect.

    Ahem?

  • It seems this saga continues unabated…

    Virologist Robin Weiss has weighed in with his thoughts on this (open access and quite readable): http://www.biomedcentral.com/1741-7007/8/124

    This article in closing mentions Martin Raff answering questions on autism, you can view that in an earlier article my blog: https://sciblogs.co.nz/code-for-life/2010/05/31/martin-raff-on-what-is-autism/. (For autism, you can replace “rumor viruses” with “toxins”.)

    Weiss’ comments have been reported elsewhere, e.g.

    http://www.latimes.com/health/boostershots/la-heb-chronic-fatigue-09292010,0,3081476.story

    As one of many who have promoted the use of links in online media stories, it is great to see the Chicago Tribune using them. Other newspapers should take note. (Use the links to see further background.)

    (H/T: ERV.)

  • The Red Cross has had that unofficial policy since summer and it is one that many countries are adopting.

    The US Blood Safety advisory committee in the United States has recommended the same. The vote was 9-4, however all agreed that donations should be deferred, the split was over whether there should be patient education materials provided or simply asking whether the potential donor had ever been medically diagnosed with CFS.

    The Food and Drug Administration does not have to follow committee recommendations, but they usually do.

    “Even if it turns out that XMRV is not the cause, there might be something else and prudence dictates a deferral of blood donations,” (retrovirologist) committee member Dr. Coffin said.
    http://online.wsj.com/article/SB10001424052748704694004576020321854485688.html?mod=googlenews_wsj

  • I thought I have seen the Red Cross make a similar statement earlier, but the Nature piece seemed to indicate it was new. Not having the time to cross-check I left it at that. (Xmas, work, etc.) Thanks for adding this.

  • More research blogging on putative XMRF-CFS links. Haven’t time to read these myself until later! – Xmas time madness… just putting up the links for those interested in the topic.

    Seems the gist is:

    “A set of papers out today in Retrovirology [4 of them] claim that many previous studies claiming to have found the virus haven’t actually been detecting XMRV at all.”

    http://neuroskeptic.blogspot.com/2010/12/xmrv-innocent-on-all-counts.html

    http://scienceblogs.com/erv/2010/12/xmrv_erv.php

    http://wellcometrust.wordpress.com/2010/12/20/chronic-fatigue-syndrome-is-not-caused-by-xmrv/

    The research paper is open-access, so when I get time…

  • Not everyone believes the studies support Dr. Tower’s conclusions including other authors of the papers published today.

    According to the WSJ, John M. Coffin, a retrovirologist and a co-author of another of today’s Retrovirology papers, told Health Blog that while his group’s study demonstrated that mouse DNA is everywhere in labs, none of today’s published papers ”definitively show that any prior study is wrong.”

    Robert A. Smith, a research assistant professor at University of Washington in Seattle who wrote a commentary in Retrovirology summarizing the studies, told Health Blog that the possibility of contamination means that future studies must be done very carefully before conclusions about disease association are made. But he said he is unwilling to state that the reported link between XMRV and CFS or prostate cancer is no longer viable.

    So without conclusive proof either way, scientists are essentially back to the drawing board hopefully knowing a bit more than when the last round of opinions were given. It will be interesting to see what virus hunter Ian Lipkin comes up with.

    http://blogs.wsj.com/health/2010/12/20/xmrv-raising-the-issue-of-contamination/

  • KAL,

    You replies could be read as implying I presented a point of view. In practice you’d find that I don’t comment on the research itself for controversial topics until I’ve had a chance to read the research papers (not blogs or other secondary material) for myself. I’m under the impression that your own judgement is being informed by secondary commentary not the primary literature – ?

    I would be wary of phrases like “definitively show” or “unwilling to state” as they usually need they full context to be properly understood properly.

    They read to me as ambiguous and hence not of much use (in fact a bit frustrating because of ambiguity) to the point that I couldn’t read not “believes the studies support Dr. Tower’s conclusions” into them.

    Certainly I’d be wary of building a case on quotes/paraphrases like these in preference to what the research literature reports!

    I’d leave this at that, but seeing I have a moment to spare (silly gullible me…) :-

    It’s possible that by “unwilling to state” he simply is wary of speaking to media; many scientists are on controversial topics.

    Poor use of phrase “not definitively show” or phrases likes it is a very common issue. In the blog you cited it has to many different possible meanings to be useful, IMO, but consider just the statistical case as an illustration.

    If someone, say, has observed a 99.998% chance (at a decent confidence level) that a finding or event is unlikely to happen. For practical purposes 99.998% might be good enough for most of us, and we might consider that they have shown that it won’t happen—to the limit that they were able to detect (hence the statistics-they reflect the ‘detection level’, if you will), but they’ll still say that they ”can’t definitely show” is it false or won’t occur because it’d be incorrect to say that.

    It’s one reasons it’s recommended that science writers report findings in the positive (see the SMC’s booklet on this; I introduced it in a post not to long ago).

    For my money, it’s a pain in the neck that this particular issue crops up so often. It seems to me that with a little care the science writer would be familiar with the issue, ask appropriately and rephrase the writing to reflect which meaning is actually intended.

    There are other ways again it could be read; the uncertainty may fall on interpretative issues. Reading the blog you’ve cited as a source, there is unfortunately no way to determine precisely what should be read of it, and the precise meaning matters.

    But bottom line: you’re saying current evidence for a XMRF-CFS link is back to the drawing board. (This is what you are saying – ?) Seems to be essentially the same bottom line as the articles I pointed to.

  • If anyone strays this way after all this time (!), Vincent Racaniello has offered a summary of Singh’s recent paper on his blog, titled “Ila Singh finds no XMRV in patients with chronic fatigue syndrome”:

    http://www.virology.ws/2011/05/04/ila-singh-finds-no-xmrv-in-patients-with-chronic-fatigue-syndrome/

    Racaniello ends his summary citing the research authors’ conclusion:

    “Given the lack of evidence for XMRV or XMRV-like viruses in our cohort of CFS patients, as well as the lack of these viruses in a set of patients previously tested positive, we feel that that XMRV is not associated with CFS. We are forced to conclude that prescribing antiretroviral agents to CFS patients is insufficiently justified and potentially dangerous.”

    As you might guess, there is a fairly extensive discussion.

  • For those following the literature on the XMRV story, another open-access paper released August 18th adds to previous observations of sources of contamination by murine (mouse) DNA:

    “DNA Extraction Columns Contaminated with Murine Sequences”

    http://dx.doi.org/10.1371/journal.pone.0023484

    They conclude:

    “Recently, several publications documented that widely used PCR enzymes and buffers can be contaminated with murine DNA [13], [14], [24]. Taken together with the data presented here, these results may explain some of the spurious “detections” of XMRV or related pMLV sequences [2], even in laboratories that use neither mice nor XMRV-infected cell lines and avoid enzymes known to contain traces of murine DNA. For those involved in detecting minute amounts of retroviral sequences in human tissue, these data may serve as a useful reminder to check reagents to confirm that murine sequences are absent before analysing tissue samples.”

  • A recent example of a documentary that, according to experts reviewing it, did not relate the ‘state of play’ of research covered in their programme is an ABC show, Four Corners that: featured “The Autism Enigma”, a Canadian documentary promoting the controversial link between autism and gut bacteria.”

    If you following the responses linked in that blog post, you’ll see that they raise the same issue my article addresses, that the ‘state of play’ of research should be presented. The researchers in these responses say the ‘state of play’ of the research is not as advanced as the documentary presented, that the work should have been presented as tentative and, at this stage, a hypothesis yet to be properly explored, noting in particular a lack of replication of the early studies. (They also note that the documentary fails to also present over lines of research, leaving an unbalanced presentation.)