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!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

Imperial College XMRV Study - Media Response

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Cort, Jan 5, 2010.

  1. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    CFIDS Association Asserts Imperial College Not a Valid Replication Attempt
    http://www.facebook.com/notes/the-cfids-association-of-america/xmrv-negative-results-emphasize-need-for-robust-replication-study/270023985538

    XMRV Negative Results Emphasize Need for Robust Replication StudyShare
    Today at 3:51pm
    Suzanne D. Vernon, PhD
    Scientific Director

    A study testing for evidence of XMRV infection in CFS patients in the United Kingdom has reported negative results. This is the first publication following the article in the top-ranked journal Science from researchers at the Whittemore Peterson Institute, the National Cancer Institute and Cleveland Clinic that garnered worldwide attention from the media and scientific community. The new report, published Jan. 6, 2010, in the open access online journal PLoS ONE, failed to detect XMRV in CFS, but should not be considered a valid attempt to replicate the findings described by Lombardi et al., in the Oct. 8, 2009 Science article.


    The PLoS ONE paper by Otto Erlwein, Steve Kaye, Myra O. McClure, Jonathan Weber, Gillian Wills, David Collier, Simon Wessely and Anthony Cleare is titled, Failure to detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome. The investigators tested peripheral blood DNA from 186 routine clinic attendees who met 1994 (Fukuda) CFS case definition criteria and were well-characterized from participation in prior neuroendocrine and cognitive behavioral therapy studies. These 186 CFS patients were reported to be unwell for a median of four years with high levels of fatigue and disability.

    This team of researchers used a special type of DNA xeroxing called nested polymerase chain reaction (PCR) reaction to amplify specific segments of the XMRV proviral DNA from the genomic DNA obtained from these 186 CFS subjects. In essence, they were looking to see if XMRV genetic material had integrated into human genetic material, which is a key characteristic of retroviral infection. The experiment included positive, negative and contamination controls, but did not test any samples taken from healthy subjects. The samples were coded so that the origin of the DNA was not known to the person conducting the PCR assays. XMRV was not detected in any of the 186 samples.

    Can this study be considered comparable to the results published by Lombardi et al., in Science? In short, no. Both studies included CFS patients defined by the 1994 case definition criteria, but this is where the comparability ends. Here are some of the ways the PLoS ONE and Science methods differ:
    The blood was collected from CFS patients in different types of blood collection tubes.

    The genomic DNA was extracted and purified using different techniques.
    The amount of genomic DNA included in the amplification assay was different.
    Different primer sequences were used that amplified different regions of the XMRV proviral DNA.
    The conditions of the PCR amplification assay were different from the numbers of cycles, to the type of polymerase used.

    Should these differences affect an investigators ability to detect XMRV? To a microbiologist with experience handling samples and studying various infectious agents (as I am), these variances in procedure could make the difference between detecting XMRV or not.

    It very well could be true that XMRV is not present in the U.K. as Erlwein, et al. suggest in their discussion, but it is also possible that the technique used in the PLoS ONE paper was suboptimal due to the different methods employed, when compared to the original experiments conducted by Lombardi, et al.

    The U.S. Department of Health and Human Services Blood XMRV Scientific Research Working Group is conducting a rigorous study to detect XMRV. Multiple laboratories will standardize methods to optimize sensitive detection of XMRV proviral DNA and viral RNA and then, once methods are standardized, these same laboratories will test coded panels of blood samples obtained from healthy blood donors and CFS patients. We look forward to the results of this study and urge that it be completed expeditiously, especially in light of this report from the U.K. In the meantime, be prepared to read about more studies with conflicting findings. Rather than simply accept or dismiss new information, we will help make sense of why discrepant results occur.

    Perhaps the most important statement in the PLoS ONE paper is the acknowledgement by this group of investigators that CFS is an incapacitating organic disease affecting millions of people worldwide. Once XMRV detection methods are optimized and made widely available, we encourage this group of researchers to take another look at XMRV as a possible explanation for the organic basis of CFS in the U.K.

    For a link to the studies referenced and more resources on XMRV, please visit http://www.cfids.org/XMRV/default.asp#info

    Citations:
    Erlwein O, Kaye S, McClure MO, Weber J, Willis G, Collier D, Wessley S, Cleare A. (2010) Failure to detect the novel retrovirus XMRV in chronic fatigue syndrome. PLoS ONE 5(1):e8519. doi:10.1371/journal.pone.0008519

    Lombardi VC, Ruscetti FW, Gupta JD, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, Dean M, Silverman RH, Mikovits JA. Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Science 8 October 2009. 1179052.
     
  2. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    New Scientist Response

    New Scientist XMRV Imperial College

    New Scientist is I think pretty respected (?). We got the first reaction from Dr. Mikovits; maybe it's not in Europe.

    The theory that chronic fatigue syndrome could be caused by a virus that jumped from mice to people has been dealt a blow by a British study that has found no evidence of the virus in people diagnosed with CFS.

    Scientists are also warning people with the condition of the dangers of dosing themselves with antiretroviral drugs.

    CFS affects more than a million people in the US and a quarter of a million in the UK. Its symptoms include persistent, severe tiredness, but its cause remains mysterious and contentious.

    The debate on its origins took a new twist in October, when DNA from xenotropic murine leukaemia virus-related virus (XMRV) was found in the blood of about two-thirds of 101 people with CFS, compared with just 4 per cent of healthy people (Science, DOI: 10.1126/science.1179052). The researchers, led by Judy Mikovits of the Whittemore Peterson Institute in Reno, Nevada, suggested that XMRV might be causing CFS.

    Missing virus

    Now a second study, led by Myra McClure of Imperial College London, has failed to find XMRV in blood samples from 186 people in the UK with CFS. "We do not share the conviction that XMRV may be a contributory factor in the pathogenesis of CFS, at least in the UK," McClure's team says.

    XMRV is a retrovirus, and viruses of this type have a history of claims linking them to diseases, which have later been questioned about 25 at the last count.

    Mikovits stands by the conclusions in her paper. She suggests that XMRV may be less common in Europe and so might not be causing cases of CFS there.

    At least one US lab is offering to test people with CFS for XMRV, while websites are abuzz with reports from patients who say they have been tested and queries about how to obtain zidovudine (AZT), the antiretroviral drug used to combat HIV.

    Health warnings

    "These are folks who've just gone and had the test done in a private lab," says Charles Shepherd, medical adviser to the ME Association in the UK, which provides support to people with CFS.

    In lab experiments reported last month, AZT was found to block replication of XMRV (Virology, DOI: 10.1016/j.virol.2009.11.013). But Richard Baker, head of the group that wrote the official UK guidelines on CFS, warns patients against taking AZT, which can have side effects. "Anyone who uses it on themselves is taking a real risk with their health," he says. Mikovits says it is unlikely to be effective against CFS.

    Negative hints

    Other researchers are trying to further establish whether there is a link between XMRV and CFS, but have not yet published the results. There are hints that these results may also be negative.

    The Robert Koch Institute (RKI) in Berlin, Germany, is also examining the link between XMRV and CFS. In November, its collaborators posted a short statement on the web saying that CFS patients had so far "rarely" tested positive for the virus. They later removed the statement.

    According to Norbert Bannert, one of the virologists at the RKI, the statement was correct, but he adds: "It's not fair to give numbers when you're at the beginning of the investigation, and the first results have not yet been confirmed by an alternative test." He declines to give further details

    McClure has also hinted that several studies due to be published soon have also found no link.

    People with CFS who say they have been tested are less restrained. On one online message board, a handful of people have reported mixed results: none of 10 patients who used one company's test said they turned up positive for the virus, while six out of 12 people who took another set of tests offered by another lab said they were positive for XMRV.

    If the virus link is not borne out, people with CFS are going to feel seriously disappointed, Shepherd warns. "I think people are going to feel very, very let down to put it mildly," he says.
     
  3. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    Eureka Alert XMRV

    No Dissenting Opinions here either



    Eureka Alert

    .
     
  4. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    Independent UK

    http://www.independent.co.uk/news/science/scientists-claim-to-have-found-the-cause-of-me-is-premature-1859003.htm

    This one from London swallows the whole study - hook, line and sinker

    and they take Science and the WPI to task for publishing the study at all.

     
  5. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    UK Yahoo

    UK.Yahoo - no dissenting opinons

    http://uk.news.yahoo.com/21/20100106...html?printer=1

     
  6. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    ME Associations Response to the Imperial College XMRV Study

    ME Association's Response to Imperial College XMRV Study
    ME Association suggests that different types of patients, different techniques and different prevalence rates in Europe vs the US could explain the differing results.

    http://www.facebook.com/notes/the-cf...e/270038560538

     
  7. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    XMRV Buzz on Imperial College Findings

    XMRV Buzz From Phoenix Rising on the Imperial College XMRV Study
    http://aboutmecfs.org/Rsrch/XMRVBuzz.aspx

     
  8. George

    George Guest

    Nice one Cort!
     
  9. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

    Messages:
    337
    Likes:
    0
    Dang, wish I knew what McClure's "hints" were about other negative findings.

    It is kind of interesting that the Koch-Institut took down their statement and then made kind of a strange statement as to why. It could be that they got negative PCRs and then did serology and got positives. Or it could be a bureaucratic snafu where one manager approved posting the statement, but a higher manager later found out about it and thought it was a bad idea -- that it might inappropriately bias other workers, or whatever.
     
  10. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    WPI Response to Imperial College Findings

    FOR IMMEDIATE RELEASE
    Frankie Vigil
    R&R Partners for
    Whittemore Peterson Institute
    775-336-4555
    frankie.vigil@rrpartners.com

    Official Statement from the Whittemore Peterson Institute Regarding UK Study


    The Whittemore Peterson Institute (WPI) has reviewed the paper entitled “Failure to Detect the
    Novel Retrovirus XMRV in Chronic Fatigue Syndrome.” This study did not duplicate the
    rigorous scientific techniques used by WPI, the National Cancer Institute and the Cleveland
    Clinic, therefore it cannot be considered a replication study nor can the results claim to be
    anything other than a failure not just to detect XMRV, but also a failure to suggest meaningful
    results.

    The scientific methods used by WPI are very exact and require specific techniques to ensure
    accuracy. Differences in techniques employed by Erlwein et al. not only explain their failure to
    replicate the WPI study, but also render the conclusions meaningless. These differences
    include, but are not limited to the following:

    1) blood sample volumes and processing;
    2) patient criteria/population differences;
    3) number and type of tests done to assure accurate results, including white blood cell
    culture;
    4) use of a molecular plasmid control in water versus a positive blood sample; and
    5) different primer sequences and amplification protocol used to find the virus, which
    were not validated by a clinical control.

    The WPI study was published after six months of rigorous review and three independent lab
    confirmations, proving that contamination had not taken place and that infectious XMRV was
    present in 67 percent of CFS patients diagnosed according to the Canadian and Fukuda criteria.
    In contrast, this latest study was published online after only three days of review. Significant
    and critical questions remain as to the status of patient samples used in the UK study as those
    samples may have been confused with fatigued psychiatric patients, since the UK has relegated
    “CFS” patients to psychiatric care and not traditional medical practices.

    “Little is known about the prevalence of XMRV world-wide, much less the incidence of XMRV
    in ME/CFS or prostate cancer” emphasizes Dr. Judy Mikovits. “WPI and its NCI collaborators
    are actively engaged with international research teams to investigate these important questions.”
    WPI does not recommend the use of anti-retroviral drugs that have yet to be proven to be
    effective in treating XMRV infection.

    However, several large pharmaceutical companies have
    expressed interest in developing anti-retroviral and immune modulating drugs that will
    effectively treat XMRV associated diseases.

    WPI looks forward to the results of other scientific groups around the world, serious about
    replicating its scientific results, by using the same techniques as WPI and its collaborators. The
    fact that XMRV was detected in 67 percent of the CFS samples in the U.S. study determined a
    significant association between XMRV and CFS, demanding a much more serious inquiry by
    responsible health agencies around the world as to the cause of this debilitating disease.
    -###-
    Whittemore Peterson Institute

    The Whittemore Peterson Institute for Neuro-Immune Disease exists to bring discovery, knowledge,
    and effective treatments to patients with illnesses that are caused by acquired dysregulation of the
    immune system and the nervous system, often results in lifelong disease and disability. The WPI is
    the first institute in the world dedicated to X associated neuro-immune disease (XAND), and other X
    associated diseases, integrating patient treatment, basic and clinical research and medical
    education.
     
  11. Summer

    Summer Senior Member

    Messages:
    175
    Likes:
    0
    Cort I put the response in it's own thread, but I'll be happy to delete it. I was afraid some members won't see it within the thread. :O)

    ETA: Can't delete a thread, so if you or a mod feel it should not be in it's own thread, please delete. :O)
     
  12. George

    George Guest

    No equivication there (grins)

    I have to say the response was impressive. Wessley/McClure took direct swipes at the WPI so I'm not surprised to see the WPI put them firmly in their place.

    I think the response was appropriate, considering the snide "discussion" section of the Wessley/McClure paper I think the response was civil.

    I was a little surprised that they came right out and made the above statement. I mean these guys don't need to get involved in the politics of CFS/ME in another country. Eventually they'll be the winners anyway. But it was really nice to have them say it on behalf of all of the UK patients and well. . .patients everywhere who have been "redefined".
     
  13. gerwyn morris

    If the Wessely semi structured interview was in fact used then the diagnostis is based on the oxford criterea. This unvalidated subjective approach might meet some of the Feduka criterea but definately not all.They certainly dont meet the Canadian diagnostic criterea and are therefore a different patient group.The results of the interviews have not been published so we dont know what symptoms were reported or more importantly recorded.Are we to take WESSLEYS, word especially considering his known bias.Why on earth are psychiatrists involved in virology?Why is the methodology different and why are the diagostic criterea different if they were genuinely attempting to replicate the study published in Science by the Whittmore institute?.I know that psychiatrists are medically qualified but are they scientists?Unless I,m much mistaken they are not Virologists

    Gerwyn Morris BSc LLB
     
  14. George

    George Guest

    Welcome to the Boards

    You may want to read "The fight is on. . ." Which covers all of your questions, eventually. (grin)
     
  15. Kati

    Kati Patient in training

    Messages:
    2,052
    Likes:
    1,545
  16. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    5
    mountains of north carolina
    Really a not-bad article Kati linked to, above, (thanks, Kati!) highlighting the competition between scientists and the suspense of it all:

    Scientist Smackdown: Is a Virus Really the Cause of Chronic Fatigue Syndrome?

    An estimated three in 1,000 people suffers from the mysterious affliction chronic fatigue syndrome. Those people were probably enthusiastic in October when a team of U.S. medical researchers released a study arguing that not only is the syndrome real (some doctors dismissed it as purely psychological “yuppie flu”), but also that they’d connected it to a specific virus. DISCOVER covered the hubbub after the paper came out in the journal Science.

    But now, in a study in PLoS One, a British research team has cast doubt on the American team’s findings, saying there’s no conclusive link between the virus and chronic fatigue syndrome, which is also known as myalgic encephalomyelitis.

    The U.S. team’s findings sounded robust when they came out. They found the murine leukaemia virus-related virus (XMRV) in blood samples of 68 of 101 patients diagnosed with chronic fatigue syndrome. Just eight out of 101 healthy “controls” drawn at random from the same parts of the US also tested positive, suggesting that XMRV played a key role in triggering the condition [The Independent]. When the scientists from Imperial and Kings colleges in London attempted to replicate these findings, however, they found nothing of the sort. Of the 186 people with the syndrome that this team tested, not one showed signs of XMRV, or of any related virus.

    Study coauthor Myra McClure of the Imperial College also criticized the U.S. team and the journal Science for rushing the findings into print in October. “When you’ve got such a stunning result you want to be absolutely clear that you are 1,000 per cent right and there are things in that [previous study] I would not have done. I would have waited. I would have stalled a little” [The Independent], she said.

    As for the new study conducted in London, McClure declared: “We used very sensitive testing methods to look for the virus. If it had been there, we would have found it…. We are confident our results show there is no link between XMRV and CFS, at least in the UK” [The Guardian]. But the U.K. team says its contradictory findings could have resulted from differences in patients. According to the new study, the discrepancy “may be a result of population differences between North America and Europe regarding the general prevalence of XMRV infection, and might also explain the fact that two US groups found XMRV in prostate cancer tissue, while two European studies did not.”

    Though McClure and her colleagues can’t say for sure how they and the Americans came to such different results, they wanted to put a stop to the rush of patients who started seeking antiretroviral treatments for chronic fatigue after the Science paper came out in October (XMRV is a retrovirus, like HIV). They say potent antiretroviral drugs should not be used to treat CFS because there is not enough evidence that this is necessary or helpful. The drugs may do more harm than good, they say [BBC News].

    This might throw a wrench into the plans of Judy A. Mikovits, the lead author of the U.S. paper, to go ahead with antiretroviral testing. But the “avalanche of subsequent studies” that one medical researcher predicted to The New York Times after Mikovits’ paper is sure to continue.
     
  17. Kati

    Kati Patient in training

    Messages:
    2,052
    Likes:
    1,545

    No problem Fresh Eyes, just defending the territory, that's all, and making sure articles are beng replied to.:Retro wink:
     
  18. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    5
    mountains of north carolina
    Hi Kati - hope I didn't come across like I was disagreeing with you, because I wasn't at all. I agree, the response from WPI is still totally needed - just wanted to point out that this article did not drink the Wessely kool-aid as much as others I've seen thus far. :Retro smile:
     
  19. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    True! It's kinda shocking when someone actually seems to have a nuanced take, huh? I had to read it twice just to make sure I was seeing what I thought I was seeing: reason.
     
  20. Kati

    Kati Patient in training

    Messages:
    2,052
    Likes:
    1,545
    Not at all Fresh_eyes, and right now I am too sick to read the entire articles- I just scan- and noticed WPI was as quick as wind to respond to it. You guys are all great advocates and I am very proud to belong to this forum. It is a lifeline to me. Thank you.
     

See more popular forum discussions.

Share This Page