Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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CMAJ questions reliability of lyme testing

Discussion in 'Lyme Disease and Co-Infections' started by sarah darwins, Sep 3, 2015.

  1. sarah darwins

    sarah darwins I told you I was ill

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    One half of a paper/commentary pairing that appeared a couple of days ago in the Canadian Medical Association Journal - http://www.cmaj.ca/content/early/2015/08/31/cmaj.150874

    A related paper here: http://www.cmaj.ca/content/early/2015/08/31/cmaj.141413

    Unfortunately, both require payment, even the commentary. Which means most Canadians will only see this sort of report:

    Source: The Chronicle Herald, Nova Scotia - http://thechronicleherald.ca/novascotia/1308872-false-positive-lyme-tests-worry-researcher
     
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  2. msf

    msf Senior Member

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    “After getting a negative test in Canada, some people still think their symptoms are caused by Lyme, and they read on the Internet that these specialty labs are better,” said Gregson. “But they’re not better at picking up Lyme, and are actually producing more false-positive results.”

    Well, I´m convinced! What brilliant logic! What command of the facts!

    Idiots.
     
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  3. msf

    msf Senior Member

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    Ok, maybe they´re not idiots, maybe they just think patients are idiots and won´t be able to understand a proper explanation.
     
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  4. msf

    msf Senior Member

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    The fact that these commentaries are often behind paywalls just furthers the impression that they aren´t actually interested in persuading patients, only other doctors.
     
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  5. msf

    msf Senior Member

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    Ok, he tries to explain his position in the article, but as usual it is both illogical and dishonest: “They’re trying to increase their ability to pick up infections by reducing the number of bands required to call positive with the western blot. But that’s not proven to be an effective way to do things. All that does is increase the false-positive rate.”

    It´s not proven because there is no gold standard for chronic lyme, which means that we don´t know that whether it´s true that all it does is increase the false-positive rate. If you think about these things logically, it will increase the sensitivity while potentially lowering the specificity, just as doing away with the ELISA portion of the two-tier test will.
     
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  6. wdb

    wdb Senior Member

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    Another report here (with video):
    http://calgaryherald.com/news/local...lse-positives-in-u-s-testing-for-lyme-disease

     
    Last edited: Sep 3, 2015
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  7. sarah darwins

    sarah darwins I told you I was ill

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    Nice find. I note the brief bit from Sarah Hutchison:

    She has a blog that looks like it might be well worth a read: https://foxnsox.wordpress.com/about/
     
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  8. duncan

    duncan Senior Member

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    The number of positives, even with the absurd thresholds embraced in North America and the UK, is rising, and worse for some of these hill people, is that the number of positives post-conventional-treatment is also likely rising.

    I suspect the new Guidelines will try to deflate further the import of securing a positive, even on the 2T.
     
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  9. Esther12

    Esther12 Senior Member

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    Was there any new evidence provided in any of these reports? Any more results for the assessment of different tests? Or is it just comment?

    Without being able to say for certain who has Lyme and who does not you can still test for internal consistency and then build up from there. When good research is conducted it lets things move beyond a mere difference of opinion. eg: IgeneX's urine test for Lyme was assessed under blinded conditions and found to be totally unreliable.
     
  10. Ema

    Ema Senior Member

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    It was a first generation test. It hasn't been in use since 2001.

    Science progresses. Would you judge a first grader under the same standards as a college student? No, because it would be absurd not to expect that one would learn something new in 15 years.

    It's totally illogical to keep bringing up a test that has been out of date for literally decades.
     
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  11. Esther12

    Esther12 Senior Member

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    Sometimes science progresses, but when it does, there should be good evidence to show that this is the case.

    I'd judge a lab by the most rigorous and recent assessment of it's testing available. I would be good if IgeneX had tried to show that it's testing was of value, and provided the evidence needed to let patients make informed judgements about whether it was worth paying for their tests, but all we have is this old assessment of their urine test which showed it to be unreliable.
     
  12. Ema

    Ema Senior Member

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    If you eliminate the five cross reactive antibodies insisted upon by the CDC and only consider the Bb specific antibodies, there cannot be a false positive on the Western blot (assuming no contamination or handling problems which is why we have CLIA certification).

    So, 0% false positives...or 70% or more false negatives leading to a lifetime of suffering and ultimately death for an affected, unknowing patient. Seems like an easy choice to me.

    I wish their noses would grow when making these kinds of ridiculous reports.
     
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  13. Ema

    Ema Senior Member

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    Then Labcorp and Quest should be held to this same standard as well.

    It's unfair to keep singling out IgeneX for special, onerous requirements.
     
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  14. Ema

    Ema Senior Member

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    If it isn't progressing, it isn't science, it's business or government.
     
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  15. Valentijn

    Valentijn The Diabolic Logic

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    Great. Then we can all agree that the mainstream testing is just as useless as the alternative ones :thumbsup:
     
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  16. Esther12

    Esther12 Senior Member

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    Yes, although a lab just presenting evidence that it is able to replicate the testing of others is unlikely to be of much interest to journals. Labs who are generating results which are the same as other labs using testing which has shown itself to be of some value should conduct assessments to show that their processes are reliable, but journals are unlikely to be interested in publishing that sort of thing. Labs whose results are divergent from current 'mainstream' tests, but who believe that their testing is more reliable should also conduct assessments which allow them to support their claims, and their would also be interest in publishing these results.

    Labs which are claiming to have made breakthroughs in the development of reliable testing do have more of a responsibility to present evidence to support their claims than those labs who are merely claiming that they are able to conduct testing which has already been shown to be of some value by others.

    What most people think of as 'science' does not always progress, and can make mistakes, mislead and encourage the mistreatment of people. I'm not sure what you mean by 'science'.

    I'm not aware of any good evidence that this is true. It would be good to have some more evidence here, but there is evidence that 'mainstream' testing is of some value, while there is no evidence that 'alternative' testing is of any value.
     
  17. Valentijn

    Valentijn The Diabolic Logic

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    No, there isn't.

    Yes, there is. The paper regarding the LTT Elispot has been shown to you repeatedly. But you insist that researchers MUST engage in blinding themselves even when there is no risk of non-deliberate bias, so nothing will convince you.

    But perhaps you can explain to me the usefulness of blinding, when bias by the patients is not a factor and unconscious bias by researchers is also not possible? Frankly you just seem to have created a ridiculous standard so that you can continue to adamantly maintain that you are right. That is not conducive to any discussion.
     
  18. Ema

    Ema Senior Member

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    Except that they're doing the SAME testing as the other labs. The reason they are more reliable is because they use more strains of Bb and better gel materials to conduct their testing - not because of inherent differences in testing methodology.

    They also provide a more logical assessment of the results than the CDC's interpretation which was never meant to be used for diagnostic purposes.

    Well, OK, I'll define science for you, if necessary.

    Science is a system of acquiring knowledge in a systematic and organized way using the scientific method. Wikipedia defines the scientific method as "a body of techniques for investigating phenomena, acquiring new knowledge, or correcting and integrating previous knowledge. To be termed scientific, a method of inquiry is commonly based on empirical or measurable evidence subject to specific principles of reasoning." (emphasis mine)

    IT'S THE SAME TEST!!! So if you say "mainstream" testing has some value, then the testing done by IgeneX has that same value plus the value they add by increasing the number of strains and the quality of the testing materials.
     
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  19. Ema

    Ema Senior Member

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    I wish I could "like" this about a thousand times more.
     
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  20. Esther12

    Esther12 Senior Member

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    I don't think that blinding needs to be the be all and end all, but I do think it's useful for helping avoid unforseen problems with things like how samples are stored and treated, over-enthusiastic pursuit of a hypothesis, etc. Blinding as early as possible in the process lets us worry less about the specifics of the process and I don't see why one would not do it as a part of one's assessment procedure. I can't remember the details of the paper on the LTT Elispot which you cited, but I think it was the one that Jonathan Edwards was not impressed by either. I'm afraid that I really can't remember if we have any evidence on the Elispot's results either, eg: are a significant percentage of people with CFS symptoms getting positive results on Elispot but not mainstream testing?

    I'm sure that at some point their will be good evidence for a new and improved way of testing for Lyme. I am not insisting that this will not happen, or that emergence of this evidence would mean that I was wrong about something, I'm just saying that when this claim is made it should be supported by good quality evidence.

    Right, but they're not just trying to produce the same results as other labs. In that way they are attempting to produce different results which they claim are most useful and reliable. I thin that they should produce evidence to support their claim.

    If it's producing different results, it's not the same test. Increasing the numbers of strains and changing the testing materials should be assumed to lead to a more useful test if we do not have evidence that this is the case.

    So then it has nothing to do with any assumption that IgeneX's test is more reliable than it was in 2001?

    You seemed to imply it did, and so I assumed you were referring to 'science' as something other than an abstract process.

    What is claimed to be, and commonly thought to be, 'science' does not always progress, and can make mistakes, mislead and encourage the mistreatment of people.[/QUOTE]
     

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