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!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

Nature: Lombardi XMRV Paper Retracted in Full

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Firestormm, Dec 22, 2011.

  1. Tony Mach

    Tony Mach Show me the evidence.

    Messages:
    146
    Likes:
    34
    Upper Palatinate, Bavaria
    2.3 Million USD? Oh, my.

    I agree that 2.3 Million USD for this study is an incredible waste of money from an scientific point of view, but if this study isn't done, some people will go on forever about how this one big conspiracy

    (Oh, plus there are those jokers who ALREADY claim that the study is set to fail, and go around posting all kinds of things that are supposedly wrong with this study. Well, if the study design is wrong, why doesn't Dr. Mikovits stop her involvement in this study? Do you know things she doesn't? And how so?)
  2. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    774
    Hi Tony,

    Can you provide links to confirm the information in your quoted post below?

    I am particularly interested in Illa Singh's prostate cancer work, so if you can provide any RELIABLE EVIDENCE (with links), I'd like to see it.

    (I'm afraid I dont read any long rants though !)

    Thanks.

  3. Tony Mach

    Tony Mach Show me the evidence.

    Messages:
    146
    Likes:
    34
    Upper Palatinate, Bavaria
    I have a copy of the 2009 Science paper. If somebody needs a copy, just mail me.

    Plus: You do realize that you do not supply any evidence whatsoever that the negative-studies were only looking for the VP62 clone (the famous "VP62-calibration" that these scientists supposedly did). Please post all relevant sequences (primer, probe, XMRV, VP62 and so on) and make your point, or ******
  4. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    774
    Actually, what biophile posted is very important.
    I can remember reading a report about widespread contamination of cell lines in the early eighties, and the author was concerned that there was a systematic failure to report this contamination because the admission could wreck years of research on a cell line and destroy the validity of research papers.

    They felt that nevertheless this problem should be discussed openly among the research community because many research results could be inaccurate as a result of having been performed on contaminated cells.
    It is quite interesting to see this problem re-emerging so many years later as an issue in ME research. And it seems that nothing was done.

  5. Jemal

    Jemal Senior Member

    Messages:
    1,031
    Likes:
    60
    You lost me when you started swearing, Tony Mach.
    Snow Leopard, Enid and Glynis Steele like this.
  6. Tony Mach

    Tony Mach Show me the evidence.

    Messages:
    146
    Likes:
    34
    Upper Palatinate, Bavaria
    Personally, while I think the risks from vaccines are very low, these risks are downplayed by scientists and blown hugely out of proportion by anti-vacciners. Furthermore, the risks from the vaccines against MMR or Polio are far far far lower than the diseases they prevent.

    Many many ME/CFS patients report a flu-like onset of their disease, without any connection to vaccines. So I think it unlikely to be caused by vaccines.

    I wouldn't rule out that vaccines might be involved in diseases, but I think it is unlikely that they cause diseases. It surely is not sufficiently investigated, but other risk factors are bigger, much bigger, in my humble opinion.
  7. Mark

    Mark Acting CEO

    Messages:
    4,527
    Likes:
    2,004
    Sofa, UK
    Well said: this is the key point about this retraction campaign, for me.

    I find myself thinking back to the statistical calculations we made a couple of years ago when the first negative papers started coming out. At that point, there were several positive XMRV papers from around the world. In prostate cancer (Germany, US, and elsewhere (?)) and in immune compromised patients (Germany), there were something like 5 or 10 reports, including several published papers, which all reported levels of XMRV in controls of roughly 5% (1%-10%, all within the margin of error for the true figure to be about 4-5%). Those papers generally also found levels of XMRV in prostate cancer of around 20-25%. Even one or two orgs like the CDC reported some (very low) percentage of XMRV in the general population.

    When the negative XMRV-CFS papers appeared, they all found 0%-0%. Assuming that the background prevalence of 4% was correct, the calculation of the likelihood of those negative papers finding none at all if their tests were valid was extremely unlikely. In a study with 200 samples, patients and controls, the chance of finding no positives with a correct test and a background rate of just 2% would be 0.98 to the power 200 - about 2%. With a background rate of 4% and 400 samples, it's about a 0.00001% chance. Overall, we were looking at probabilities considerably lower than that last figure.

    Overall, then, what we were very clearly looking at was just two possibilities. Either XMRV does not exist in humans at all, and all the papers reporting XMRV in humans were wrong, or the negative papers couldn't detect XMRV in humans. (And the idea that XMRV didn't exist in humans at all looked highly unlikely, after so many labs had reported finding it, in different levels in controls vs patient samples).

    The same reasoning applies to all the contamination evidence (Propotka et al, etc): All of it applies equally to the prostate cancer papers and the paper on immune-compromised patients as it did to ME/CFS. All of that XMRV negative evidence and contamination evidence is not, and never was, evidence against an association between CFS and XMRV. It is evidence against the existence of XMRV in humans.

    And yet the entire debate has focused solely on the Lombardi paper and on the claim that XMRV and HGRVs are associated with ME/CFS. Prostate cancer is almost never mentioned. Those prostate cancer papers are not reconsidered or retracted, their researchers are not vilified, and all the negative energy is focused on the WPI, Dr Mikovits, Lombardi et al...and of course on ME/CFS patients for being outraged by the way this saga has unfolded.

    A fundamentally illogical, grossly unfair, and grossly misleading narrative - just the sort of treatment we have come to expect...
    jace, Snow Leopard, currer and 3 others like this.
  8. Jemal

    Jemal Senior Member

    Messages:
    1,031
    Likes:
    60
    Well said Mark. By the way, Dr. Snyderman posted this on Dr. Deckoff-Jones blog:

    currer and Enid like this.
  9. Lou

    Lou Senior Member

    Messages:
    476
    Likes:
    300
    southeast US
    Well, that explains it. And here most of us were thinking what a labrythine mess to sort out. But outright fraud, huh? Now I don't think she should haz the Nobel prize either. Please, do keep us informed.
    Wonko likes this.
  10. biophile

    biophile Places I'd rather be.

    Messages:
    1,387
    Likes:
    4,587
    Well of course it doesn't. It would be unfair to lump all researchers together, but the double standards from the scientific and medical establishments towards different research specialties helps to fuel the ongoing mistrust that the ME/CFS community has for these establishments which have previously demonstrated incompetence on the issue of ME/CFS.

    We either understand a particular topic ourselves, or we appeal to an authority on that topic which does. Mistrust in such authorities encourages the reliance on our own understanding, and many of those who still support a possible association between XMRV/HGRV and ME/CFS or at least want to see the research continue have chosen to look into it themselves. I'm not vouching for all their arguments or lumping all these people together into one group with all the same conclusions.

    They are now being told by an establishment they don't trust that retrovirologists, who have been using contaminated cell lines for decades without knowing it, have competently "discredited" the XMRV/HGRV association and can be trusted when concluding that the research is dead or should be canceled.

    Unlike others, I have not invested enough time and energy into the issue of XMRV/HGRV to comment on it with much confidence. My limited impression is that it looks in doubt with a few remaining questions but I await the results of the final NIH study. Lipkin seems like someone who is competent and trustworthy, and Mikovits who is involved has accepted this study as the final word. However I have invested enough time and energy into the PACE Trial to comment on that critically with more confidence and I trust my own understanding over other authorities on this particular issue.

    In the eyes of the "establishment" and lay skeptics, the remaining XMRV/HGRV proponents are irrational extremists with poor arguments against the work of certain retrovirologists, and are raging conspiracy theorists for suspecting political motives have been involved in the XMRV/HGRV saga just as it has been throughout the entire history of ME/CFS research.

    Similarly, I'm probably seen as an irrational extremist for being critical of the PACE Trial and probably also seen as a conspiracy theorist for merely wondering if proponents of CBT/GET with reputations on the line have changed their methods half way through the study for reasons other than what they claimed.

    All I am saying is that regardless whether the remaining XMRV/HGRV supporters are right or wrong, I can understand why they trust their own reason and intuition over that of the authorities they don't trust and see as incompetent. This sort of thing is only going to continue as long as the relevant authorities don't show more consistency and respect for ME/CFS.

    No, it doesn't make the Science paper OK. It does however ask the question about what these retrovirologists still cannot detect.

    Luckily I kept my (paraphrased) swearing until the very end. :p
    Jemal and Wonko like this.
  11. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,334
    Likes:
    1,854
    Australia
    What is the opportunity cost of having no treatment for ME/CFS in the USA?
    Between US$25 billion (Jason et al) to $51 billion dollars per year (Lin et al. CDC estimate). It kind of makes the money spent on XMRV research look like chump change.
    Wildcat likes this.
  12. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,128
    Likes:
    1,684
    Somewhere near Glasgow, Scotland
    If one does not know, then one has no right to be certian the risk is negligible or catastrophic, and there for, that field should pull pull their finger out and have massive, umbiased, non-phrama corp research on this

    When it IS about a pharma product that is forced onto kids in increasing numbers....then you must be 100% certain.

    Nobody would trust the pharmacorps with any other product like they blindly trust vacines, it's blinkered! Time after time they are shown to have lied and commited outright even criminal fraud on safety etc regardign products that make them money!
    And the attitude of many that "vaccines save lives they must be protected at all costs!" is mind boggling arrogant

    Vaccines are just pharmaceutical products big deal! Their advantage is in potential prevention, which is of superb value, but they are not "God Particles" :p
    Sorry to break to folk but they did NOT "stop diseases uber super kalifragilistikexpealadocious", public health/civil engineering had been making much bigger changes.
    Smalllpox eradicaiton was great, but public swerage has saved vaslty more lives, and Human stupidity will probably unleash smallpox again, be it by bioweapon, lab accident or dumbass use as a genetic tool.

    I'm not anti-vaccine, I jsut treat 'em with a great degree of skepticism as liek all treatments, they have issues, none are safe, and the pharma corps lie out thier backsides, and many are woefully blinkered by the blidning putting benefits above honeslty revealing negative issues.
    The potential hazards with vaccines are obvious, just as with diamorphine or any other drug etc.
  13. alex3619

    alex3619 Senior Member

    Messages:
    7,236
    Likes:
    11,380
    Logan, Queensland, Australia
    On vaccines - just because most ME patients do not get sick just-post vaccine does not mean the vaccines cannot be a cause. That is a simplistic arguement that has been shot down many times on the PR forum. Similarly a week incubation period in the epidemics does not mean that the virus that causes ME has to have this incubation period (presuming a virus is the cause). Both of these arguments might be correct, they are certainly valid hypotheses, but both are unproven and there are other alternatives. So little is known about ME that every theory has to be considered an hypothesis/model at this point. Until we have solid answers, every stone must be overturned to find out what might be crawling underneath. Bye, Alex
  14. markmc20001

    markmc20001 Guest

    Messages:
    877
    Likes:
    80
    Heya. Firestorm. you were a private banker? Interesting.

    I've followed this saha the whole way through. I've watched the media blitzes, the constant media propagnda (not only about XMRV), the snarky blog commentary, and the herds of new patients carefully spinning commentary.

    It all seems contrived and staged to me. My opinion, everybody else has theirs.

    To me, Actions speak louder than words. Been too many strange actions to dismiss as coincidence for me.

    I'm also of the opinion that the special interests outnumber the good guys 10 to one on the forums. The few good guys just don't care to fight 10 to 1 of the special interest reps at once. The good guys aren't commenting anymore out of disgust from past conversations essentially I guess.

    Mark
    Wildcat likes this.
  15. markmc20001

    markmc20001 Guest

    Messages:
    877
    Likes:
    80
    The special interests have run another media blitz. Just look at the strange commentary in the comments section of the first article I pulled up. Not to mention the authors strange spin on the topic, like trying to prove CFS is not psychological. :cool:



    http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2011/12/22/MNA21MG36K.DTL
  16. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,975
    Cornwall England
    Washington Post 23 December 2011: http://www.washingtonpost.com/natio...-controversy/2011/12/22/gIQADvc6BP_story.html

    Study linking virus to chronic fatigue syndrome retracted amid controversy


    By Brian Vastag

    A two-year scientific controversy all but ended Thursday when the prestigious journal Science retracted a study linking a strange virus to chronic fatigue syndrome, a sometimes-debilitating disorder with no known cause.

    The journals editors lost confidence in the study after at least a dozen attempts to replicate the finding failed, Editor in Chief Bruce Alberts wrote in a retraction notice to be published Friday.

    Further, the studys authors omitted important information from some of the figures in the paper, Alberts wrote.

    The retraction formally removes the study from the scientific record.

    I think its 99 percent the end of the story, said John Coffin, a virologist at Tufts University who worked on a team that could not replicate the original study.

    Published in October 2009, the retracted study generated a wave of hope among chronic fatigue patients that a cause of their illness had finally been found. Led by scientists at the privately funded Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nev., the study reported that a bizarre virus, xenotrophic murine leukemia virus-related virus (XMRV), was found in the blood of 68 of 101 chronic fatigue patients.

    But as laboratories worldwide failed to replicate the discovery, criticism of the original report mounted.

    In May, two reports detailed how XMRV was likely a lab-borne contaminant, not a blood-borne virus. The case further unraveled in September, when nine laboratories tested for the virus in 15 people previously found to carry it. Only two of the labs found the virus in the supposedly infected individuals. The labs also reported conflicting results from the blood of 15 healthy individuals.

    As far as virologists go, the story ended a long time ago, said Vincent Racaniello, a virologist at Columbia University, referring to the September report. Theres no evidence at the moment that any virus is associated with chronic fatigue syndrome.

    The story took a bizarre turn in November, when the scientist at the center of the controversy, Judy Mikovits, was jailed in California.

    Mikovits was an author on the retracted report and a chief champion of the notion that XMRV or a similar virus is linked to chronic fatigue. She was fired from Whittemore in September for insubordination. The institute then accused Mikovits of stealing laptop computers, flash drives and laboratory notebooks.

    Ventura County, Calif., sheriffs arrested Mikovits on Nov. 18 on a felony fugitive from justice charge stemming from the allegedly stolen materials, according to court records.

    Audrey Young, a spokeswoman for Whittemore, said Thursday that Mikovits, now out of jail, did turn over some of the materials, including a laptop which she had wiped clean. She did not turn over all of the material, and thats an enormous problem.

    A civil lawsuit filed by Whittemore is requesting the return of all of the lab materials. Mikovits could not be reached for comment Thursday.

    One prominent patient advocate said the saga has been a roller-coaster ride. But most patients have now moved on, said Kim McCleary, president and chief executive of the CFIDS Association of America. Theyre certainly disappointed and discouraged that this did not pan out the way it was initially promoted. But they understand theres no point in pursuing a dead end.

    Last year, the original study prompted the American Red Cross to ban blood donations from chronic fatigue patients.

    On Thursday, a Red Cross spokeswoman said the groups policy remained unchanged. If somebody tells us they have chronic fatigue syndrome, we will continue to defer them, said Stephanie Millian, although not because of fears of XMRV transmitting through the blood supply. Rather, Millian said, the Red Cross was following the lead of patient advocacy groups that advise ill patients not to donate blood.

    Between 1 million and 4 million Americans are thought to have chronic fatigue syndrome, a mysterious disorder that causes prolonged and severe fatigue, body aches and other symptoms.

    While the retraction removes the original study from the scientific record, it cant undo two years of expensive sleuthing, including a $2.3 million National Institutes of Health study now underway.

    That study is searching for XMRV in 150 patients and 150 healthy subjects. The scientist leading it, Columbia Universitys Ian Lipkin, said in an e-mail that it was important to finish the study to rigorously address the controversy.

    NIH will continue to support the study through its conclusion next year, said a spokeswoman for the NIH branch funding the study, the National Institute of Allergy and Infectious Diseases.

    Alberts disagrees with that decision. He said Thursday there was no reason to continue the NIH-funded study.

    I think this whole thing has been a tragedy for science, he said. The scientific community has put so much time and effort into this.
    '
  17. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    774
    I am one of the people who used to post frequently on this forum and have not been doing so recently, but this is just due to other changes in my private life.
    It does get hard to keep reiterating the same points over again when the XMRV research is attacked but I feel it is necessary that those of us who support Dr Mikovits and Ruscetti's research continue to respond.

    Why do I still support this work?

    It is far too early to close down research into MLVs as a human pathogen. The early stages of any new field of research are always confused, misleading, and open to multiple interpretations. THIS IS BECAUSE IT IS NEW AND THE WORK WILL PRESENT DIFFICULTIES!
    I think some people do not understand this, and have turned away mistakenly

    The problems with replication that we have seen in the Blood Working Group are not sufficient at this stage to prove that nothing has been found.
    Indeed, the statement that was released following the BWG, if I remember correctly, was highly suspicious, as it said "Human Gamma-retroviruses do not exist" a statement that is demonstrably false if the prostate cancer findings are being allowed to stand, and also because of the work in the seventies by Gallos lab, which found MLVs in human leukaemias.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC393258/pdf/pnas00023-0360.pdf

    As I remember Dr Mikovits mentioning at the IiME conference, they were having a lot of problems with the type of assays they were required to develop for the BWG, and I did not get the impression she was very happy with them.

    Yet this one this particular study has been used to prove that all the prior research was inaccurate. It does not show that. The BWG was convened to develop rapid throughput assays to protect the blood supply, not to prove or disprove the existence of MLVs.
    http://www.mecfsforums.com/index.php/topic,10534.0.html

    It is far too early to decide one way or another and to block research that is just beginning. In these circumstances, the responsible action is to err on the side of caution and give as much support and time as possible to the research. If the AIDS research had been prematurely shut down when it gave early conflicting results the subsequent pandemic would have been much more devastating.
    Jemal likes this.
  18. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    774
    There is no scientific basis for withdrawing the unretracted section of the Lombardi paper.

    Mikovits and Ruscetti have been deliberately forced into a false position.
    They have been saying that they can find polytropic MLVs in patients. No-one will hear them. Why?
    It is accepted by both sides that there was early contamination with the VP62 clone "XMRV". This section of the paper has been retracted already.

    But the polytropic viruses found by Mikovits and the antibody reactions to MLV proteins are unrefuted. No additional evidence has been presented to justify this further retraction of the Lombardi paper amid the massive self-congratulatory publicity that we see.
    PokerPlayer and Wonko like this.
  19. alex3619

    alex3619 Senior Member

    Messages:
    7,236
    Likes:
    11,380
    Logan, Queensland, Australia
    Hi currer, I am with you on this. The BWG was not intended as proof or disproof of anything but high throughput testing for the virus. The Lipkin study was the one that was designed, from the outset, to confirm or disconfirm the XMRV hypothesis. It needs to be completed, and fortunately Lipkin seems to agree with this.

    About human gammaretroviruses, its highly improbable they do not exist. Highly. If the virus has the capacity to enter a cell via specific receptors, it will be found in a huge population if you look hard enough. That doesn't mean it will have the same effect as in the original speciies, but its likely to be similar. We have defences against such viruses. Why is nobody asking why? Its because we have an evolutionary advantage to be resistant to them. We have this advantage because humans who didn't failed to reproduce once they were infected - and this happened in a seriously bad way, enough so that nearly all of us inherited these defences. What does such an advantage mean? Most people, most of the time, will not be infected by casual contact with these viruses. It follows then that some people some of the time could be infected, the virus can evade the (probably defective) defences. Once it enters the population, it then becomes blood transmissable ... and the saga continues. If a person is viremic when giving blood (which is only some of the time for these viruses) then there is likely to be enough virus for a high risk of evading all defences. So expect to see a low transmission rate .... hmmm, what diseases do we know with a low transmission rate?

    This also explains epidemics. If normally transmission is low, then during some event causing immune deficits, say a combination of toxins and another virus, then the retrovirus might be capable of evading the compromised defences, resulting in a pathological epidemic of what is usually a benign but omnipresent virus.

    None of this demonstrates that XMRV is it though, nor the variants claimed by the WPI and others. For that we need more research. Somebody said on the forum today that compared to the annual losses caused by CFS the amount spent on XMRV was not even a drop in the bucket, or something like that. Chump change. We need all paths explored, including possible retroviral causes, and the cost is so very minor compared to what we are already losing in economic terms (without trying to calculate the human or social cost). I really hope we get to hear from Lipkin by March, we need that data, whether it be for or against a retrovirus association.

    Bye, Alex

    PS In reply to your next post, I too think retraction is a sign of political intervention rather than scientific. Its a mistake. Pre-holiday announcement suggests this also. Now this does not mean conspiracy, or vested interests necessarily, but it is political. The whole ignoring ME research is part and parcel of that politics. A partial retraction was sufficient to address the earlier issues and it had already happened.

    Now wasn't there a paper by White (2003?) that Jason had proved was highly deceptive (2008?) due to manipulation of statistical data? Why wasn't that retracted? The entire biopsychosocial school was tainted by that, and nobody seems to care about widespread institutionalized bias in this area of science.
    currer likes this.
  20. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    774
    I agree with Firestormms post in this quote from Alberts, though.

    "I think this whole thing has been a tragedy for science."

See more popular forum discussions.

Share This Page