The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Sensitivity of markers in Lipkin study

Discussion in 'General ME/CFS Discussion' started by Andrew, Aug 24, 2016.

  1. Andrew

    Andrew Senior Member

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    There is something that's been in the back of my mind but I'm not able to do anything about it now.

    1. John Chia told me that Lipkin's markers are not sensitive enough for chronic illness, and that he is using a sensitivity that is applies more to acute illness. He also told me that he was at a ME/CFS conference where Lipkin spoke, and asked him from the audience how sensitive his tests are. During the exchange Lipkin asked Chia how sensitive he thought they should be. So, of course, I asked Chia if he told Lipkin his opinion, and said "no." So I strongly urged him to send an email to Lipkin, and Chia said that maybe he would.

    2. I read an article by a rep from an Epstein Bar foundation (I don't remember which one) that said pretty much the same thing about tests for chronic illness needing to be more sensitive than what Lipkin is probably using. And in the article she said nothing about having a discussion with him.

    Now, if these two people who specialize in ME/CFS think that tests are not sensitive enough, don't you think they should tell Lipkin this. I don't know if either of the two above even followed up on this. And I know from experience that we cannot assume these things automatically get sorted out. So if any of you are in touch with the people above, could you ask them if they contacted Lipkin. And if not, light a fire under them to do it.
     
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  2. frederic83

    frederic83 Senior Member

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    I'm always surprised by the lack of cooperation between researchers. They should have their own Phoenix rising forum where they could exchange about their theories and talk about patients cases. The publication system is not enough.
     
  3. halcyon

    halcyon Senior Member

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    Are you talking about viral serology or the cytokine assays or something else?

    I get the sense that they understand the limitations of the cytokine work they did and they are continuing to work in this area, looking at longitudinal samples in patients rather than cross sectional. I wouldn't think this assay suffers from any major sensitivity issues beyond what is already know about the limitations of this kind of testing.

    I assume the sources you quote are speaking more about viral serology assays, and I think this is a valid criticism. For years these people have been saying that it's not a chronic viremia, you have to look directly at affected tissues. If you do the right serology on the right patients it's abnormal, but you have to dig deeper. Several years ago Lipkin seemed to want nothing to do with the idea of taking tissues samples out of ME patients, I don't know if his view on this has changed or not. If I recall correctly, they are going to be using some novel serology testing but it's more of a binary thing, showing what viruses you have or have not been exposed to, rather than attempting to quantify antibody concentrations to demonstrate current infections. I believe all the other virology work they are planning to do is strictly blood based, and if so, I predict that again they won't find anything, because they're looking for the wrong things in the wrong places.
     
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  4. Esther12

    Esther12 Senior Member

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    I didn't think Lipkin ever claimed that his results were clear enough to be a 'test' for CFS, did he? I saw them presented as more of a signal of areas worth investigating.
     
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  5. frederic83

    frederic83 Senior Member

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    If they really want to use blood for viral detection, they should find a good method like Chia did with the ARUP lab test and the tissue samples. With this method, the detections match. Period.
    I'm not sure about the Lipkin study, but apparantly he tries to find every possible virus in the world in the blood. He should focus on the well known culprits and find a reliable test that will correlate with the tissue samples.
     
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  6. alex3619

    alex3619 Senior Member

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    We discussed setting something like this up, way back when Cort was still here. I don't think anything came of it.
     
  7. Gingergrrl

    Gingergrrl Senior Member

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    This is a phenomenal idea although I know that it will never occur. Without naming names, I did a one-off consultation with a well-known ME/CFS doctor that I waited eight months for and spent weeks preparing all of my medical records to bring. As soon as he walked in the door he said, "I am not going to look at any testing that you brought from Dr. X (my own ME/CFS specialist). I was floored and quite upset b/c the testing had come from Quest Labs and ARUP labs (in both cases) regardless of who actually ordered the test. As you can imagine the appt went from bad to worse but I was quite horrified that my doctor was dismissed right off the bat which partially led to me being dismissed and the appt had potential to be productive. The potential for any collaboration was completely lost. (And none of this has to do with Lipkin who I have never interacted with in any capacity).
     
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  8. Andrew

    Andrew Senior Member

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    I assume so. But I just thought of something. Can't they spin the blood and extract the DNA, then use an array to see what virus or bacteria is there. I think De Risi even developed a way to streamline this with a procedure that eliminates (or ignores) DNA that is not the type they are searching for.
     
  9. halcyon

    halcyon Senior Member

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    Of course, if the pathogen is there to find in the blood. With enteroviruses and ME, the observation has been that there is a distinct lack of viral RNA to be found in the blood, but ample viral RNA and viral protein found in cells. This implies it's a non-lytic active infection limited to tissue compartments with little measurable spillover into the blood.
     
  10. RogerBlack

    RogerBlack Senior Member

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    http://www.microbe.tv/twiv/tag/vircapseq-vert/ - podcast on the technique above to get 'all' the viruses present in the blood.

    There are related techniques to find 'all' the antibodies to viruses you've been exposed to - which could answer some of the concerns about (if it is viral in origin and has gone latent) no viral DNA in blood.
     

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