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TWiV 164: A look back at 2011: XMRV, CFS, and Prostate Cancer

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Firestormm, Jan 2, 2012.

  1. Esther12

    Esther12 Senior Member

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    Hi - it's possible we're misunderstanding each other here, so just to be clear, I'm referring to problems with Wessely's non-XMRV CFS work, and am not defending Lombardi and Mikovitz. You could well have realised that, but I know that some people with an interest in only XMRV visit this forum, and I can write on the assumption that all readers are familiar with the background of CFS, which might lead to confusion.

    I agree that it's silly to talk as if McClure's XMRV work was weaker than Mikovitz's, given the results which have followed.
  2. floydguy

    floydguy Senior Member

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    If the researcher community is so simplistic, it's no wonder there has been no progress on ME, MS, many cancers, and other diseases.
  3. barbc56

    barbc56 Senior Member

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    Esther, thanks for pointing out your thread. Somehow I missed it. I find your posts refreshing and unbiased and that's what we need more of for an even discourse.

    Barb C. :>)
  4. barbc56

    barbc56 Senior Member

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    Actually, I think what Joshua said is a very good summary about the state of science at this time. Occams Rrazor comes to mind.


    I appreciate his insight about how patients might be preceived.
    Barb C. :>)
  5. biophile

    biophile Places I'd rather be.

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    A look back at a year of double standards on XMRV and CFS and Prostate Cancer

    I think it is also important to remember how patients view this:

    1. XMRV was first associated with prostate cancer and then CFS (which was also associated with similar pMLVs).
    2. XMRV turned out to be a recombinant contaminant and it has been assumed that pMLVs were also contamination.
    3. The feverish skepticism and cynical criticism towards the work associating XMRV/pMLVs with CFS has been deafening, but in comparison there is a strange silence on the prostate cancer studies.

    So if someone starts talking about how the Lombardi/Mikovits and Lo/Alter papers are bad science in need of retraction but don't treat the XMRV prostate cancer papers with a similar degree of skepticism, to an actual patient (at least one without knowledge of the details about the differences between CFS and PC studies) that's going to end up sounding like hypocritical double-standards.

    After decades of incompetence, neglect, double standards on psychological vs biological research, pseudoskepticism, funding misappropriation, politics, denigration, dismissal, etc, the ME/CFS community is sensitive when it comes to suspicious behaviour. That must be understood when researchers wonder why patients have doubts about them or their work, especially when it turns out that these retrovirologists have been using contaminated cell lines for decades without realizing it, raising the question of what else they cannot detect.

    As ukxmrv wrote, context is important, the "researcher view" seems simplistic. Wessely is dragged into it because he has been involved in a view of ME/CFS which, when given the same dose of investigation applied to XMRV, appears to be a house of cards as well. Only a patient or advocate can really understand how frustrating it is to see reams of dubious psychobabble published every year without challenge from the "scientific community" while patients who critique it are deemed irrational extremists.

    McClure and Wessely may have been correct in saying no link between XMRV and CFS, but at the time their study was the first negative and it was an obvious rush job compared to Lombardi et al, with McClure saying she was "1000% sure" and Wessely saying that even if he found a virus he wouldn't do anything about it anyway because he is in "the business of rehabilitation" (of correcting abnormal illness beliefs/behaviour).

    I have to agree with much of what Esther12 wrote too.

    Good luck trying to apply Occam's razor to ME/CFS without major reductions in explanatory power!

    Reminds me of when Ecoclimber once implied that the retrovirology community were basically judging the entire ME/CFS population on the actions of a few individuals.

    Yes, but this is ME and CFS we are talking about, somehow it lowers some peoples' intelligence. Not a fan or anything, but after seeing one or two Harry Potter movies, I can just imagine a spell involving the phrase "blah blah blah chronic fatigue syndrome!" which puts uninformed outsiders into a babbling stupor, haha.
  6. floydguy

    floydguy Senior Member

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    Unbiased? What is that supposed to mean? You seem to be suggesting that points of view you agree with are unbiased and points you don't like are biased or maybe not factual?
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Biophile, what you said is where I was coming from- why is everything just fine with Wessely lying all the time in journals; but when there are some issues with a biomedical ME study, hordes of guardians of science rectitude come out of the woodwork to jump all over everything, sometimes pointing out genuine issues, but often exaggerating and overstepping the evidence.

    Alan or whomever was correct that the podcast is about virology not ME, so in a sense, I shouldn't blame them for ignoring those issues. On the other hand Condit and Dove seem to relish in the gossip about Mikovits and ME patients 'harrassing scientists.' And they repeat alot of these untrue or distorted rumors/BBC articles : ) uncritically.

    For example here, Alan says Mikovits urged patients to take ARVs. She did not. She just refused to go on record as condemning their use when prompted to by reporters. She said she is a scientist not a clinical physician, which is entirely appropriate. Doing otherwise would at least technically be a breach of ethics and illegal.

    Alan or Rich here says there's no evidence of Wessely or CDC committing fraud. There is evidence. They state things categorically if they don't know. It is misleading. They should say "I'm not aware of any evidence..."

    It is going to take me a while to respond to them with a measured and cited response. I think I will just send them a thank you note now for responding to my concerns.

    Esther, I should have phrased my talk of CDC, McClure and Wessely more precisely when I said they were frauds involved in XMRV/ME science. I meant XMRV and/or ME science, but it seems like i was talking only about ME's possible association with XMRV. McClure definitely way overstepped the evidence and acted improperly and was unchallenged, except by patients and WPI. I don't think there is evidence of fraud; i shouldn't have said that.

    CDC may have committed fraud in it's XMRV study and it's promotion of it by using the Reeves definition (use of which itself is arguably fraud) and then saying it used the Fukuda definition. Maybe not. I'll have to consider that more.

    CDC and Wessely have clearly committed fraud re ME research. But, yes the very clear fraud is in other, non-XMRV research and I should have made that clear.

    I guess I'd say that given the content of the show (including some gossipy comments about Mikovits and ME patients) that they should at least mention the 'other side' and also that CDC and Wessely have been accused of fraud re ME by many and some fraud has been proven on the part of CDC (I am referring to lying to Congress in testimony year after year).

    I would also ask them as a huge favor for patients and science that they look further into the Wessely, NIH and CDC problems. But that is asking them to go beyond the call of duty since that is not strictly their field.
    currer and pollycbr125 like this.
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Here are the two emails I sent to TWiV

  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Regarding the first email, I shouldn't have included the cancers as 'accepted by science' since it hasn't been published in a journal. I haven't rechecked but I am right about all the viruses. Of course, they haven't been shown to cause ME. They have been accepted as being associated with ME, which he insists they are not. I am going to have to go through the literature. This isn't my area of expertise. Can anyone volunteer to write up something on the viral connections. I will at least do the triggers which even Bill Reeves and Wessely admit (R. says he's 'open to' this). And about the cancers. Maybe I got myself into this argument so I should get myself out, but if anyone could help, it would be appreciated.
    currer likes this.
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Barb, you are right, no studies have been published in a journal. However, it would be very easy to sort out. Just start with comparing incidences of these rare cancers (non-hodgkins lymphomas such as Burkitt's and Mantle Cell) in the tahoe cohort, the general population and other diseases with cancer associations. It's night and day as I said in my previous post. More comprehensive studies could follow.
  11. Esther12

    Esther12 Senior Member

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    Hi Justin.

    I see what you were saying in your e-mails, but I think I disagree with you somewhat, and think that the way you phrased yourself made you sound more unreasonable than you are. I'm going to point out some of the problems I see with your e-mails.

    eg:

    It's really unclear what you mean here. There is very strong evidence that suffering from certain acute viral infection dramatically increases the likelihood of developing CFS in the following year... but it's far from clear that is what you were saying. It sounds more like you're saying that it's completely accepted that there is a strong association with certain ongoing infections and CFS, which is a more questionable point (depending upon what is meant by 'strongly associated', the criteria for CFS used, etc, etc. This isn't something I know much about, but there seems to have been conflicting studies in this area... although that's certainly not to say that on-going infection is not a key problem. The recent discussions on the difficulties of understanding the association between EBV and MS sound very similar to those that surround CFS).

    I don't know anything about associations with different cancers and CFS, but I tend to read psychological studies rather than things in this area.

    I think that this is a really bad sentence.

    You don't provide any supporting evidence for the suggestion of bias. At this point, believing that Mikovits is wrong is not evidence of bias.

    You jump in with accusations of fraud (a big thing) without any supporting evidence.

    You assume that they would know what the 'Wessely school' is (unlikely) and then confuse matters further by saying McClure is included, when she has only been involved in CFS and XMRV.

    I would feel dismissive of an e-mail that made these claims without supporting evidence... and I start with a pretty deep hatred of Wessely.

    You'd not provided any evidence of 'sketchiness' from the other side.

    If you are going to make a claim that people are 'proven frauds', you need to provide the proof. And I think that jumping in with the claim of being a 'proven fraud' is a bad idea. Better to lay out the areas of CFS research which you think are problematic, and leave it to your reader to decide if that is 'fraud' or not. In Science, 'fraud' can take on a different cultural meaning than it would in other contexts.

    If you went through examining all of the manipulation of data which led to Esther Crawley's recent claim that PACE showed a 30-40% recovery rate for CBT/GET, then I think that almost all researchers would be deeply concerned about it... but I'm not sure they'd consider it fraud, even with her own financial interests involved. There'd be a strong desire to view it as a series of mistakes or miscalculations... scientists like being able to assume that they are all trustworthy.

    re "wage war on ME science" - I don't know what you meant here, but it again sounds really over the top without supporting evidence.

    There isn't much bad virological CFS research, and as they said, they're a virology podcast. I'd really like it if they did take the time to carefully examine some non-virological claims that concerned patients... but I don't think them sticking to virology is reason to accuse them of bias.

    Given the claims that Mikovits has made in the media, focusing on McClure for criticism is a bit unreasonable. Her minor missteps are not going to be of any real interest to most virologists, and I share their disinterest.

    There's no way most people would consider that fraud, and I wouldn't either. There are difficulties around the different criteria for CFS, but I don't see this example as anything close to being fraudulent.

    Other than the misappropriation of CDC funding, I'm not sure there's much that could be considered 'clear fraud'. I think that you need to get your evidence gathered together, to the point that you can make a really compelling case. There's certainly a lot of bad and misleading CFS papers, which are then often spun further by the researchers involved... but it's normally tediously complicated, rather than 'clear fraud'.

    In an e-mail to someone you do not know personally, there is less room to rely on conversation. On a forum, uncited claims can be casually made on the assumption that others will ask for a reference/link if they are interested... one is less able to rely upon that sort of back-and-forth when sending an e-mail to a pod-cast.

    Yeah.... your e-mails didn't sound like they were asking for huge favours though. I don't think that you''l be able to bring this one back. I'd put this in the 'lessons learnt' pile, and try to remember to be more careful about how you communicate with others in the future, rather than try to continue a correspondence with Virology. I also think that you need to start examining the evidence used to support some of your claims, as I don't think all of them are true.

    The quackery that does surround CFS is pretty deeply infuriating, but if you get caught up in that anger, it will make it much harder for you to communicate with those who do not share it. It can also lead you astray, and in to holding beliefs which are not supported by the evidence. I also think that the hunger to escape this past quackey has led a lot of patients to feel more committed to an association with XMRV/HGRVs than would otherwise be the case.

    ps: I'm sure that I've made similar mistakes to the ones I'm now criticising you for, and will likely go on to do so again, so I hope that you don't take any of this personally. You seemed open to some criticism, and that alone is an impressive thing - a lot of people aren't. CFS is a really confusing diagnosis to be stuck with, emotionally and intellectually, and we all struggle with that.

    Thanks. We could do with some people who are well read of Wessely et al., yet are still willing to defend them. They seem to be in strangely short supply.
    Firestormm and RRM like this.
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Putting aside your more helpful comments for the moment, let me just register that I think that would detract from the forum. It would add to the stress and anger that most of us feel. Not sure why you think their short supply is strange.

    I am going to write back. I do want to respond to some of the claims they made above. I may have caused some damage, but i think the situation can be salvaged. Also not responding will probably be taken as though i could not respond because they were right about everything. I may just end up writing mostly to Vincent. He is on CAA's scientific advisory board so I think it is appropriate to address these things with him whether or not they wind up on twiv.

    I agree we need rigorously cited communications/documents (for general use). I have been planning to work on that but as you know things go slowly. Anyone willing to help and work on a short comprehensible and cited piece on a relevant topic (general statement, funding, CDC or NIH bias, UK situation, nomenclature, etc) for posting on ME websites and sending to the powers that be would be much appreciated.
  13. Esther12

    Esther12 Senior Member

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    That was just my hilarious and wry sense of humour. Despite my willingness to hand out advice to you, I easily slip into communicating rather poorly myself. Sorry.

    I really wouldn't worry about feeling that you have caused some harm, or that you do not want them to think that they are right about everything. These things happen. At the same time, if you do choose to try to provide them with some information that you think is important, good luck.

    re referenced documents: There are a quite few about, but of varying quality. It is hard to do a thorough job on top of all other CFS stuff.

    I remember Tate Mitchell's piece on PACE being a good attempt to explain patient concerns:

    http://forums.phoenixrising.me/show...Trial-Protocol&p=225226&viewfull=1#post225226

    It doesn't focus much on the moral/political problems, so readers might not understand why patients are so angry about it, but it does do a really good job of explaining many of the ways in which the results were spun, while still keeping it all relatively well condensed.
  14. barbc56

    barbc56 Senior Member

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    Nope not at all. I don't know if we would agree on everything, however I find her type of discourse follow the rules of good solid debate. I like debate, analyzing information. What I don't like are sweeping statements without any support as it detracts from the real issue at hand. :>)
  15. barbc56

    barbc56 Senior Member

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    Not all patients would agree with what you say. Not all patients would agree with what Joshuha says.

    I have listed many studies where xmrv has been found to be contamination in prostate cancer. These papers just don't seem to receive as much pubilicity, so people may not be aware of them, but they do indeed exist.

    I will find my original post and copy it here.:>)

    Here is my original post.

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