Tuesday, January 5, 2010

UK Study a Sheer Disappointment - Credibility of Replication Study Questionable

It has come to my attention, and I have read the research article "Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome" in the publication PLOS one.  I have studied the facts behind the research, which I find rather unremarkable at first glance.  However it has come to my attention from Dr. Suzanne Vernon's analysis that different primers were used, collection methods varied from the Whittemore-Peterson study, different methods were used to purify genomic DNA and amounts differed, and PCR amplification methods were different.  The fact that a different polymerase was used could skew the results altogether, fouling the results - the golden rule in replication studies is copy exactly!!!  What I did find remarkable however, is who is behind the research - noting the psychiatric connection: Institute of Psychiatry, King's College London - and none other than Simon Wessely - Britain's own version of Dr. Reeves - which pours some cold water on the credibility of this study - statements issued by Wessely stating his opinion before the experiment was done, and the speed in which it was done indicates it was not a good quality study.  Before any conclusions can be reached, I would like to see the results of the ongoing study by Dr. Kerr, which in my opinion should bear a significant amount of credibility, as should the Swedish study by Dr. Jonas Blomberg.

I would hope that the Whittemore Peterson Institute will retest the samples in this study, and establish whether or not experiment protocol was followed - meanwhile it's a waiting game for results of other studies.  Hopefully ME/CFS patients will not be forced to hear that neuropsychiatric psychobabble much longer - and the only way the truth behind ME/CFS will be known is through generously funded, high-quality studies.

11 comments:

  1. The BBC article on the study states, "They analysed blood samples from 186 patients with CFS and found none had the virus, PLoS One journal reports."
    Really? None? Not even one? I'm no virologist, but this strikes me as absurd.
    Susan Vernon from cfids offers some explanations on the discrepancy.
    http://www.cfids.org/cfidslink/2010/010603.asp

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  2. yes..apparently the virus exsists in the US and even Belgium (where demeirleir has found it) but has somehow skipped the UK altogether LMAO

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  3. Timothy,

    Thank you for your great blog! Would it be an idea to send an official reaction to today's 'news' to BBC, Independent etc?

    Eva
    Amsterdam

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  4. If it is later proven this research was carefully fudged for the benefit of large sums of money thrown at psych stuff this would be no surprise to me.

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  5. Abstract and access to full paper in text and PDF format on PLoS ONE site here:

    http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0008519

    PDF of Imperial College London News Release here:

    http://tinyurl.com/ICLNewsReleaseJan10

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  6. The New Zealand Herald carried an article about a month ago stating that Mikovits was currently testing 500 patients from the UK and the results were coming out the same as the US. Something smells I think. Heres a quote from the article which you can read here.
    http://www.nzherald.co.nz/medicine/news/article.cfm?c_id=255&objectid=10602278&pnum=1

    " She is testing a further 500 blood samples gathered from chronic fatigue patients diagnosed in London.

    "The same percentages are holding up," she said"

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  7. Pasting WPI's response:

    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.

    -more-

    Continued

    “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.

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  8. UK people are sending their blood to the VIP dx lab in the USA for XMRV testing.

    From the results so far it appears that over 50% (8/15) are testing positive for the virus.

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  9. Thank you for this - it helps us laypeople to have your reviews and to understand what info is correct and what we should take with a grain of salt. A foremost expert on CFS, Dr. Jacob Teitelbaum, has just put out a new book called Beat Sugar Addiction Now: http://endfatigue.com/. It is written in a simple style and outlines his easy to follow, multi-step plan. He begins by identifying 4 main types of sugar addicts and then outlines a specific plan for each type of addict to follow. He explains how sugar plays into the problems suffered by each kind of addict and goes into detail when clearly and succinctly explaining how to beat the cravings. While Teitelbaum does not provide recipes or meal plans, he does give guidelines for healthy eating and lists of recommended foods as well as the glycemic index for many common foods.This book would probably be helpful not only to people attempting to lose weight, but also to those with illnesses such as Type II Diabetes, Fibromyalgia, and Chronic Fatigue Syndrome, just to name a few. Though Teitelbaum is a medical doctor and is clearly coming from a medical background, he writes in layman's terms and creates a book that will be easily understood by most people.

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  10. As I read the tumultuous resistance in this out look I wonder why? I also take into consideration that medical testing and protocols are just now coming into a phase of testing. My grand-father also a Cambridge Alumni was one that encouraged Eli Lily to do more clinical testing on drugs. Clinical testing as per protocol is not even something that was a factor 70 years ago just a guess.

    Taking all of this in as a CFS patient I get angry that there aren't more people fighting to get this through so we can take care of a world of sufferers. Thanks to WPI and and people like you to get this ball rolling!

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  11. I just wish that I understood why they or anybody can't re-do the testing as per the protocol? is it a money thing? why do the results have to be replicated? I guess I just wish I understood what the delay is. It seems this will effect the entire world or maybe not.....because testing might have to be different for different peoples in the world?

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