1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Ergonomics and ME/CFS: Have You Hurt Yourself Without Knowing It?
Having a chronic illness like ME/CFS can make it hard to avoid problems that come from bad ergonomics. Jody Smith has learned some lessons the hard way ...
Discuss the article on the Forums.

Chicago Tribune: Manipulation alleged in paper linking virus

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by LJS, Oct 3, 2011.

  1. floydguy

    floydguy Senior Member

    Messages:
    650
    Likes:
    238
    LOL, when has this community ever been in harmony? There won't be much harmony until there is clear biomarker for ME and some agreement as to what the core issue of this disease is. Should XMRV be eliminated there will be some who will want to study exercise issues while others will want to study biotoxins/mold and on and on.
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    Parismountain, I totally agree.

    Cort, I do agree Dr. M didn't react well under pressure; I feel she overstepped the facts more than once. I wish that were different. Of course, all of her 'opponents' did too, at the same level or far worse (Wessely, McClure, Towers) and most of them had really bad motives. And who knows how much worse they would have acted if under the same unjustified attacks Dr. M was.

    I'm glad she was the one they hired. All in all, she is getting the job done, she cares about the truth and patients. If we didn't have Mikovits, who would we have at WPI instead? No other scientist has the cojones for this job, the job of really impacting ME science.

    Everyone's an individual, but from a certain distance all the other scientists kind of look alike, and I don't like what I see. To generalize, they are spineless wimps, so insecure of having their peers think they are wrong that they don't do science, ie look objectively at important scientific questions, make an educated guess and test it. They look at the important questions through 'glasses shaded with fear' (to coin my own 'herdism'), fear that they won't be funded if they say something true that Fauci doesn't like, fear they could be seen as being wrong.

    I will definitely take Mikovits over the other competent scientists out there that in a lab designing and doing only incremental little experiments whose results could not possibly contradict the NIH view on "CFS." For example, I would not want a Klimas there, doing good science, but whose impact is felt, but not that much and who kill a little bit of my soul every time they stab me, even if unintentionally with soundbites of 'chronic fatigue' and graded exercise in the media. I'll take a real honest, smart person who will fight for us, over an absentminded professor any day.

    Mikovits and Annette give us hope and tell us with their actions that we are worth fighting for; that's more valuable than etiquette to me and i think most patients.
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    Cort, I'm pretty sure the reason that patients in general cut Mikovits more slack than McCleary is that it is very clear that Mikovits cares about us and is ready to fight for us and McCleary clearly does not and is not. She's there to punch the timeclock and cash the fat checks.
    ukxmrv and PokerPlayer like this.
  4. floydguy

    floydguy Senior Member

    Messages:
    650
    Likes:
    238
    I completely agree at least part of the research world seems to have been taken over by Risk Managers, Actuaries, HR Directors and others who are so petrified of making the wrong move nothing is getting done to really advance certain areas of science. Perhaps it's time to outsource scientific research to China or look at different avenues than how research is being currently conducted.
  5. leela

    leela Slow But Hopeful

    Messages:
    2,396
    Likes:
    2,824
    Couchland, USA
    It is *awful* how it's ripped the community apart. I hate that part.

    But Cort, there is nothing to agree on. There either is or isn't a retrovirus. The mere possibility that one might exist needs to be investigated thoroughly, right away, for everyone's sake inclusing the general public, without any more political machinations, obstacles, or in-fighting.
    ukxmrv likes this.
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    Trine is a poo-poo head. This is beyond cavil.

    She has a long history of biased reporting and it stems from her being fed a bunch of CDC nonsense by her sister who apparently collaborated with CDC on paper(s) "proving" that vaccines are totally safe. her beat was local eateries until her sister fed her the CDC-generated nonsense.

    I'm not a scientist, but i'm underwhelmed by the 'charges.' Mikovits was a little lazy or rushed and it was more efficient to do it this way than to do some more editing. Considered alongside the reasons Dr. M gave, it seems like quibbling to me.

    This story was generated by a very mentally unstable person, ERV. does it really deserve this attention? not really, but we have Trine to thank for this nonsense. If I were a reporter, my reaction would be 'ehhh (shrug); what else you got?' Keep in mind these are reporters who are supposedly too busy to look into trifles like a standard operating procedure of patent fraud in "science" publishing by Wessely, BMJ, etc.
    ukxmrv, Wildcat, currer and 1 other person like this.
  7. leela

    leela Slow But Hopeful

    Messages:
    2,396
    Likes:
    2,824
    Couchland, USA
    I love you, Justin!:hug:
    Wildcat and justinreilly like this.
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    haha love you too, Leela!
  9. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    774
    It is amazing to see how a minor issue is being deliberately morphed into something it is not.
    This is preliminary to forcing the retraction of the Lombardi paper altogether and we are being softened up to accept it.

    Doesnt this seem familiar to us? Havent we been here before? Would truly mediocre research engender these massive attempts to discredit it?

    Take a reality check everyone. Then you will realise how unlikely the accusations are.

    We are expected to believe that Frank Ruscetti, who did the blots is an incomptent fraud. Is this likely to be true of him?
    The man who discovered HTLV1 in the early eighties using techniques that would now be primitive?
    And yet...even though Ruscetti did the blot it is somehow always Mikovits fault.
    She has risked her career, it is clear, to help us.

    meanwhile, even though Mikovits has always stated the retrovirus can be foung if you DONT calibrate to VP62 everyones research ignored this clear directive.


    IMPORTANT
    I was present when Bieger presented positive findings of HGRVs at the IiME conference. He said that once he followed JMs directives, they could find the virus in 40% of their samples. And as they improved theit techniiques, they expected the rate to rise.

    Yes I really heard him say that. And it is on the IiME DVD.

    Yet we have never seen any positive papers (including the Bieger one) that can corroborate what JM has found - because they never get published.

    Influential scientific journals publish sensationalist and tawdry gossip pieces on the subject instead. This reveals the massive and orchestrated bias that exists, following on from the HIV epidemic, to deny retroviruses as a cause of new diseases.
    leela, ukxmrv and Wildcat like this.
  10. Esther12

    Esther12 Senior Member

    Messages:
    5,262
    Likes:
    5,445
    So it can't have been mediocre research, because so many people think it is wrong? The XMRV paper got a lot of attention - whether it was accurate or not was always going to be an important issue.

    I don't know how important this issue with the slides/results is going to turn out to be, but the results from the BWG, which showed that the WPI and Ruscetti were unable to distinguish between samples from those who previously tested 'positive' and healthy controls who had tested negative, under independently blinded conditions, is certainly important. I don't think that tje slides issue is going to be quickly and fully resolved, and I hope that the Science paper is not retracted before we get the results from Lipkin - but if the Lipkin study once again shows a failure to distinguish between patient and control samples, I hope that Mikovits and her co-authors will themselves call for their paper to be retracted.

    I don't think you can assume the allegations are that specific. At the moment the allegation in it's loosest sense is: "This doesn't look right. Have you omitted significant information from your science paper?" That does need to be answered.

    Anyone claiming that there is an active conspiracy against the notion that a retrovirus identified by the WPI is related to CFS should have some positive evidence of this, rather than just the fact that most research now indicates that this is not the case.

    Generally, poor CFS research results from a lazy failure to account for confounding factors, failure to report important outcome measures, tinkering with the statistics so that they fit the authors presumptions... nothing like as serious or clearly fraudulent as actually hiding evidence of a retrovirus circulating in the blood supply! It's really nuts to think that scientists, lots of them, would be willing to do this.

    Just because CFS has often been poorly treated doesn't mean that we should assume all research in to CFS is corrupt or incompetent, or that it's acceptable to just believe that results you find disappointing is false.
  11. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,445
    Likes:
    1,943
    London
    Esther, the BWG was never intended to be a test of the different labs ability to find XMRV or HGRV's. Dr Mikovits spoke at the IiME conference on the restraints being put on them. She spoke about the blood collections and how it was being done differently than how their lab did it. That was a problem for her as she didn't have a test developed for this method.

    Are you going to call for the Lo paper to be retracted based on the BWG - why so much emphasis on the Lombardi et al Science paper?
  12. Esther12

    Esther12 Senior Member

    Messages:
    5,262
    Likes:
    5,445
    re the BWG:

    It was set up to test if there was a new and detectable retrovirus circulating in the blood supply. Mikovits acknowledged that the results showed testing was not reproducible. If she thinks she knows of specific reasons why that is, then she will get another shot with Lipkin, but it looked like the BWG tried hard to do everything right, and had already been trying to find the most appropriate collection methods. I've not seen anything saying that Mikovits had wanted the collection methods changed and the BWG refused, or explaining what her problems with it may have been.

    I did say we should wait for the results from the Lipkin study. If the Lo/Alter labs get similarly poor results there, then I think that the paper should be retracted, or else a note indicating that the results were likely to be the result of error should be added.

    (Actually - maybe I should not talk of 'retraction'. Plenty of papers with results now shown to be false are not retracted. I'm not entirely clear on what it is that leads to retraction - but I think that if Lipkin's ttesting of the WPI/Mikovits/Ruscetti/Lo/Alter is also negative, it should be accepted that their earlier results were almost certainly a result of error).
    Sam Carter likes this.
  13. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,445
    Likes:
    1,943
    London
    The Blood Working group was set up to see if there was a bulk testing method under their conditions. That's what failed. Your jumping to conclusions and misrepresenting the results.

    It is a disgrace that we still don't have a test to find HGRV's in bulk testing methods

    The BWG was never a trial to see if the WPI, Rushetti or Lo could find HGRV's based on their existing methods as the conditions were set by the BWG. You are putting the worst possible slant on things when you could wait and see what transpires and what explanations are given.

    If you have any evidence to contrary please produce it as you are the one producing this argument rather then keeping an open mind.
  14. Esther12

    Esther12 Senior Member

    Messages:
    5,262
    Likes:
    5,445
    I don't think that's right. The labs were able to use whatever assay they thought would provide the most accurate results. I have posted a quote about this, but I can't remember where to find it now, and I don't think anyone has ever explained why they think otherwise. I think that Bob also re-read the paper, and confirmed this was true.

    There were rumours from the other forum that only testing the WPI thought would be ineffective was allowed, but I don't think they ever posted any reason for believing this was true, and we've since seen that many of them are unable to recognise two identical images are the same.

    I had a quick search for the quote, and found this bit Bob had pulled out (ta bob):

    http://forums.phoenixrising.me/show...hing-important&p=208918&viewfull=1#post208918
    Sam Carter and Firestormm like this.
  15. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,445
    Likes:
    1,943
    London
    An assay doesn't include all the initial work like blood tubes, collection conditions, what they contain and preparation.

    Dr Mikovits said at the IiME conference that she was being asked to use tests on conditions that they had not tried before. It was a best endeavour by them (my interpretation) and it didn't work. We don't know why and it is unfair to keep casting the worse possible interpretations on it.

    I don't know if any of the rumours are true (i.e. Vipdx tests not the WPI, no proper agreement on negative controls (where is the chart to show these in the paper for example?), contamination in blood vials sent to the WPI by other agencies) etc.

    We need a proper post-mortem on this and not parroting the actual paper when it only refers to parts of the process as if that was the entire protocol from start to finish. To imply that the WPI/Lo/Ruscetti controlled all the variables from start to finish as they would in their own labs is not proved by you.

    If you have an argument with another forum please do not keep bringing it up here. I made no mention of any other forum. There are rumours all over the press and the internet.
  16. Esther12

    Esther12 Senior Member

    Messages:
    5,262
    Likes:
    5,445
    Right, all of the samples for all of the labs were collected in exactly the same way, as part of the blinding process. The BWG had been working to find the best way to collect samples in order to allow accurate testing though, and we've not heard of any specific problem with how it was done, that would have prevented accurate testing.

    It is my impression that most of these rumours stem from a couple of members from the other forum who have shown themselves incapable of recognising that two identical images are the same. The claim that the BWG was only interested in bulk testing methods was another rumour that seemed to start there, and that is what I was replying too, even if you did not specifically mention the other forum. They keep confidently making inaccurate claims that are eventually debunked, but leave CFS patients looking foolish as they've excitedly spread them around the internet in the meantime. Following the extreme denial we saw in their response to ERV's post, I don't see how anyone can give any credence to anything else they would now claim that lacked independent confirmation.

    PS: Hope you're well. I'm off to get some dinner.
    Sam Carter likes this.
  17. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,445
    Likes:
    1,943
    London
    Blinding could easily have been done without all the preparation being handled by a group, the blood tubes/preservatives pre-determined and more importantly stopping the labs from replicating the methods that they want to use and had been shown to work before.

    This has nothing to do with blinding.

    You are assuming that there were no problems but it's not a fact. It's just your guess and shows a bias in favour of one opinion only.

    We know that the BWG failed to return a method of determining if HGRV's can be detected using their collection, preparation methods and the tests done by multilabs.

    It was never a test of the WPI or any lab being able to detect HGRV's under conditions that have been shown to work before.

    There may well have been problems with the collection, blood tubes and the preparation that detemined that end result.
  18. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,974
    Cornwall England
    I wasn't sure if others were aware of this event taking place or not. Nothing seems to have been posted elsewhere and perhaps here is as good a place as any to post:

    https://www1.gotomeeting.com/register/606452768

    Fri, Oct 14, 2011 9:00 PM - 10:00 PM BST

    'Results of the Blood XMRV Scientific Research Working Group Study

    Webinar Registration

    In 2009, the Blood XMRV Scientific Research Working Group was formed to design and carry out a study to determine whether xenotropic murine leukemia virus-related virus (XMRV) posed a threat to blood safety. Phase III results were published on Sept. 22, 2011 in Science. Study leaders will present their findings and discuss their consequences for blood safety and the understanding of this agent's role in chronic fatigue syndrome (CFS).'

    Not sure what these things consist of to be honest but presumably you get to ask questions about the BWG results and methods etc. Might be worth registering? :cool:
  19. Esther12

    Esther12 Senior Member

    Messages:
    5,262
    Likes:
    5,445
    ukxmrv:

    I'm not saying that it's a fact that there were no problems, I'm saying that we don't have any evidence to support the rumours of problems. What specifically was it about the way the samples were collected/stored that Mikovits thought would be a problem? Did she raise this with the BWG in advance? What was their response? Given the way collection and storage methods were focused upon last time, and the importance to the BWG of finding out if there was a detectable retrovirus in our blood supplies, I've not seen anything that would indicate that they did anything but try to provide labs with the conditions that would allow for the most accurate testing possible.

    There may have been some problem which means that the results are invalid, but it looks like they tried hard to avoid any potential problems, and I've not seen any good reason to believe that there was one.
    Sam Carter likes this.
  20. Lou

    Lou Senior Member

    Messages:
    474
    Likes:
    299
    southeast US
    Hi Cort,

    Conspiracy theorists like the 911'ers, the no moon landing'ers, etc, have indeed colored our reflex response to that word, conspiracy. Doesn't mean conspiring no longer exists.

    My opinion is there's no drink, there's no drug quite as addictive as power. Here in the U.S., elsewhere, too, it is not absurd to often equate money with power. What powers-that-be gain if a retrovirus is squashed as causal of ME/CFS? Insurance companies? You bet'cha. CDC? Yep. Others? For sure. The naivety in this case may turn out to be those who phoo-phoo the possiblity of vested interests hardball from powerful entities protecting what's most important to them, their pockets.



See more popular forum discussions.

Share This Page