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!
AVIVA Semi-Finals: National ME/FM Action Network is competing for $100,000
The National ME/FM Action Network in Canada is competing for $100,000 for biomedical research of ME and FM in the Aviva Community Fund contest. With thanks to all who helped, they made it through the first round of voting into the Semi-Finals.
Discuss the article on the Forums.

Why WPI and VIPDx positives need to think carefully

Discussion in 'Action Alerts and Advocacy' started by jace, Feb 8, 2011.

  1. jace

    jace Off the fence

    Messages:
    855
    Likes:
    170
    England
    Anyone who has tested positive with WPI or VIPDx should be very cautious about letting their blood be tested again by any study soliciting known positives. Think about it - to replicate Lombardi (which would be great) they do not need a group of known positive patients, as that was not what Lombardi had. Their lives would be made easier with a known positive sample, but that is readily available from the WPI. The protocols are published, and Mikovits would be more than happy to help explain what they did in the Science paper, if anyone needed clarification of the published protocols.

    The only reason studies would solicit a known positive cohort is to be able to bury the science. We know there are people out there that are less than honest, and ready to put a negative spin on any research that gives them half a chance - vis the Wellcome Trust press release recently by Prof. Towers.

    BP Danielson, GE Ayala and JT Kimata; Detection of Xenotropic Murine Leukemia Virus-Related Virus in Normal and Tumor Tissue of Patients from the Southern United States with Prostate Cancer Is Dependent on Specific Polymerase Chain Reaction Conditions; J Infect Dis. (2010) 202 (10): 1470-1477. doi: 10.1086/656146

    JA Mikovits, VC Lombardi, MA Pfost, KS Hagaen and FW Ruscetti;* Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome;* Virulence; Volume 1, Issue 5 2010 pp 386-390 DOI: 10.4161/viru.1.5.12486
     
  2. Cloud

    Cloud Guest

    I thought the Columbia study was recruiting known positives? Surely that study wouldn't have wrong motives?
     
  3. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    What a statement Jace...So Joliceur -funded by a patient group - is trying to bury XMRV. So is Malderelli? And Miller??? The BWG is using known positive patient samples....

    I can think of at least one good reason a researcher would want to look at known positives......they haven't been able to find it in CFS patients - so their best chance of finding XMRV (and saving the field) is to look for it in known positives. They are taking this step because it is their last best chance of finding the bug....Think Occam's razor - either they're actually trying to find XMRV or there is some conspiracy afoot to deny themselves a source of funding for the next ten years (ie not find XMRV).. Occam's razor says retrovirologists want to find retroviruses.

    Of course you can go with worldwide retrovirologist conspiracy to make sure that CFS patients are treated by behaviorists not retrovirologists. Maybe the retrovirologists really do want to give behavioral psychologists their work and funding for the forseeable future........ if they are they are very giving!

    The best explanation for me of all the problems is that XMRV is a much more difficult pathogen than expected. That -as with any pathogen - different research groups have thrown different protocols at it. They are not doing this because they don't want to replicate the WPI's study - they've done that because that's what they do with every pathogen and usually you can find a pathogen in any number of ways. That has not been true with XMRV. I think we'll see more and more comprehensive studies and more and more studies that hew more and more closely to the WPI's original attempt.

    From what I've been told the PCR studies have already hewed pretty closely to the original study. That has not occurred for other parts of the study.
     
  4. jace

    jace Off the fence

    Messages:
    855
    Likes:
    170
    England
    No, that's not the case. To reproduce results in science you must replicate to control confounding variables.

    PCR is in reality a complex chemical reaction, governed like any other chemical reaction by the Arrhenios equation*

    The melting point of the primers is a measure of the stability of the hybridisation process and whether the reaction will produce specific product and the 3' end construction of the primers is vital to determine whether the reaction will even proceed.

    Changing the salt concentrations, magnesium ion cocentration and annealing temperatures will have aprofound effect on the sensitivity and specificity of the reaction.

    The base sequences of the primers themselves will also determine whether an annealing process takes place at all. The molecular ratio of DNA template to primer concentration is also crucial.

    Last, the thermodynamic task of locating a viral sequence integrated in DNA and merely mixed with DNA is very different and the parameters involved in the chemical reaction have to be changed accordingly. This needs DNA from a known clinically positive sample. As we know, the WPI offer to supply a known positive sample.

    The technique of calibrating PCR conditions to locate a synthetic clone simply does not work and would defy the known laws of thermodynamics.

    Scientists who change variables unneccesarily are bad scientists,

    Continuing to use a technique with a 100% failure rate is beyond incompetent. good scientists copy successful techniques, not unsuccessful ones. The people who failed to find the virus actually used variations of the same technique which has always failed.

    When someone wants to retest XMRV positives using techniques which are now known not to work the intelligent can quickly conclude why. It is certainly not because they want to find said virus is it?

    Because XMRV is difficult to detect using PCR, relying on a failed PCR approach is either the height of stupidity or worse.

    If they want a clinically positive sample to ajust the parameters of their PCR reaction to in vivo conditions they are freely available from the WPI.

    If a more complete explanation of the thermodynamics involved is needed it is available. in fact it can be reduced into one equation!

    *http://en.wikipedia.org/wiki/Arrhenius_equation
     
  5. clouty

    clouty

    Messages:
    2
    Likes:
    0
    So it's really serious, and we shouldn't give our blood to studies if we are xmrv positive?
     
  6. JT1024

    JT1024 Senior Member

    Messages:
    559
    Likes:
    365
    Massachusetts
    Bump...

    While I have yet to be tested, I have major concerns participating in studies. If I had already been tested by WPI/VIPDx, I would not participate in another study. without first consulting WPI. To date, there have been numerous "studies" that have elected not to attempt to replicate the WPI study. Most have chosen methods that most could predict their outcomes (negative).

    What is wrong with the scientific community? It is not longer science that holds their attention but the potential for international recognition and funding. What bothers me most is the total negligence to the ordeal patients endure. I work in healthcare. I see life/death every day I work. It disgusts me how the CDC and its close associates have dismissed ME/CFS. There are individuals who are complicit in this effort. I am taking personal notes.

    Many/most of us have suffered for way too many years. There are many people on forums with significant experience and depth and in many fields. We are not going to take it any more.

    Hello "patient advocacy organizations"???? If you've been "advocating for 10+ years and have practically nothing to show for your efforts, time for a reorg or perhaps a new organization will take your place. Times have changed. Patients are fed up. "Quiet" or "inside voices" have not worked. Time to move on.

    Unity? Give me a break. Unity with who? I need sleep. I know I'm ranting but I know it is time. Enough of the garbage.
     
  7. jace

    jace Off the fence

    Messages:
    855
    Likes:
    170
    England
    Don't worry, JT, rant on. The internet is a game changer too, like the WPI. What's been did and what can't be hid, to paraphrase Dylan...
     

See more popular forum discussions.

Share This Page