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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CFS with normal NK cell function

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by anna007, Jul 1, 2016.

  1. anna007

    anna007

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    Hello,
    This is my first post here. I'm suffering from symptoms that resemble cfs for almost 3 years. I've done a ton of tests and everything is fine. One doctor eventually diagnosed me with cfs, but he didn't do anything about it.

    I read that low nk cell function may be used as a biomarker, so I found a lab that do this test.

    The results are following:
    NK function: 33.9%(Ref. range 20-40)
    NK lymphocyte number: 0.32(Ref. range 0.29-0.60)

    I also did Th1/Th2 profile, and the results are:
    INFγ: 26950 pg/ml(Ref. range 3160-22534)
    Interleukin-4: 130 pg/mL(Ref. range 27-123)
    Th1/Th2: 226.9(Ref. range 80.9-226.4)

    I also did antibody tests for EBV and CMV:
    CMV IgG: 280.2 U/mL(Ref. range 0-1)
    CMV IgM: 0.336 COI(Ref. range 0-1)
    EBV VCA IgG: 11.6(Ref. range 0-1.1)
    EBV VCA IgM: 0.145(Ref. range 0-1.1)

    Can I have CFS with this results? Has anyone with CFS have similar results?

    Here is one study that connects CFS with low NK cell function:
    http://www.ncbi.nlm.nih.gov/pubmed/8148445

    The problem is that in that study the unit of measure are LU and not percentage, so I cannot compare those results with mine. However, the ref. range is 20-250 LU and nobody with CFS had >100. However, results in healthy controls are not evenly distributed. So, I don't know what to make of my results...
     
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  2. drob31

    drob31 Senior Member

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  3. duncan

    duncan Senior Member

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    Some recent research has suggested that there is a tipping point after 3 years or so for many ME/CFSers. It would be interesting to see if NK cell function dips after that third year in general for pwME.

    Regardless, NK cell function has NOT been clearly established as being a biomarker for ME/CFS. Also, remember that there may be subsets of us with characteristics peculiar to each subset. There are efforts underway to clarify those subsets.

    And as @drob31 suggested, I'd recommend taking a solid studied look at TBD's, before diving into the CFS rabbit hole.
     
    Last edited: Jul 1, 2016
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  4. Kati

    Kati Patient in training

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    Hi @anna007 I wonder what lab you used for NK Cell function and whether your sample was fresh. In the US, Quest does most of the testing, though dr Klimas uses her own lab and all samples need to be processed pretty quickly otherwise the results are not accurate.

    This said, have you consulted with a physician expert in ME and similar illnesses? It might well be the most sensitive thing to do considering they would hear about your medical history, onset history and perform pertinent testing which could help in getting a proper diagnosis.

    A patient forum is unreliable in diagnosing people but we are usually pretty good in offering support ;)
     
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  5. Hip

    Hip Senior Member

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    ME/CFS is diagnosed on its symptoms (and by ruling out similar conditions), rather than by lab tests.

    You might like to look at the CDC definition of ME/CFS, or the stricter the CCC definition (see page 2), and see if your symptoms match those criteria.


    The viral testing results are more useful for treatment purposes.

    It looks like you might have active ongoing infections with Epstein-Barr virus and cytomegalovirus, which are both viruses linked to ME/CFS. But I am not really sure, as I am not clear on what the ranges are for an active infection. On your lab report for these viral tests, does it say anything like "these results suggest viral reactivation" or "these results indicate a past latent infection"?

    EBV can be treated to an extent with the antivirals Valtrex or Famvir. Nexavir may also work against EBV. A more potent antiviral is Valcyte, but that requires medical monitoring, due to potential side effects, and is expensive. Valcyte does have the advantage of targeting both EBV and cytomegalovirus though.

    There are also other ME/CFS treatments that you can consider: see this roadmap.
     
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  6. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Dear @anna007,
    There is no agreement amongst immunologists about NK function in CFS so I wouldn't bother with the test. As Hip says, the illness is diagnosed by symptoms, not tests, except to exclude other conditions.

    I think you need to be aware that there are a number of labs that will sell immunological tests that mean nothing. Th1/Th2 balance means nothing. The numbers you give above for the various tests suggest to me that you might do well to forget all those results. As an immunologist I would, because results from labs with recognised science programs don't look like that. (The viral antibody levels don't look to me indicative of ongoing infection anyway.) You need to be guided by a doctor looking after you.

    I can understand your desire to look further for treatment but remember that at present we have no reliable evidence for any treatment being effective in CFS.
     
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  7. ebethc

    ebethc Senior Member

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    are you saying that NK cell numbers/function only dips after a few years w CFS?

    Is the NK cell role in CFS controversial, or is it just an emerging topic? I thought it was the latter
     
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  8. ebethc

    ebethc Senior Member

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    what do you make of these EBV results? I'm not sure that I undestand the concept of ongoing infection.. The literal meaning is that the patient is out of the acute phase of the infection - that's clear.. However, my results are chronically high, and subjectively, I feel like I constantly have anywhere between 20 - 90% of the flu, so these results make sense to me (3 of 4 EBV tests consistently "High")
    1. EA-IgG = 2.98 High
      • < or = 0.9 is negative"
    2. EBNA-IgG = > 5.00 High
      • < or = 0.9 is negative
    3. VCA-IgG = > 5.00 High
      • < or = 0.9 is negative
    4. VCA-IgM = < or = 0.9
      • < or = 0.9 is negative
     
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  9. duncan

    duncan Senior Member

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    No, I wasn't saying that. I was alluding to Lipkin research that suggests a three-year cut-off in some immune reactions in pwME. I don't believe NK cell function was one, but I'm not sure. I was merely speculating that it would be interesting to see if that three-year mark also correlated with NK cell function.

    I was pointing out that NK cell function is not accepted yet as a biomarker. That does not mean it won't eventually be accepted as such for at least a subset of pwME. More research is needed.

    I certainly wouldn't call NK cell role controversial, though. I think "intriguing" might be a better qualifier. I can only hope it is an emerging topic; it should be. Others have supported it as a significant marker, and it would be good to know one way or the other.
     
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  10. ebethc

    ebethc Senior Member

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    the thing I wonder most about w NK cells is whether or not it's a "downstream" marker of something else... the lack of research is frustrating
     
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  11. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I am not sure there is a lack of research into NK function, so much as a loss of interest. It is a very old finding (rather than emerging) now and has not been replicable sufficiently for other groups to follow it up. Unfortunately private labs are selling the test, probably with poor quality control.
     
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  12. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Those look like evidence of immunity to EBV. Nearly everyone is infected with EBV and has immunity of this sort. The virus hangs around in all of us in trace amounts doing nothing as far as we know. High IgG levels to EBV have nothing to do with having flu like symptoms. Private labs sell these tests to people hoping buyers will think they are learning something about themselves, but only because they do not know what they mean.
     
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  13. ebethc

    ebethc Senior Member

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    right, EBV has 90 - 95% infection rates for adult population rate, from what I've read. so, you're saying these labs are typical?
    BTW - these labs are from Quest, which I believe is a mainstream lab. not sure what the difference is between a labcorp/quest vs private labs. thanks.
     
  14. ebethc

    ebethc Senior Member

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    good to know re old finding... btw, these labs are from Quest. not sure what the diff is between labcorp/quest vs private labs.
     
  15. duncan

    duncan Senior Member

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    I understand what you're trying to say here, but I must disagree on a couple of levels.

    First, knowledgeable ME/CFS clinicians are interested in NK Cell function.

    Second, to say some tests have not been sufficiently replicable simply is to repeat a problem that pervades much of medical research. It is particularly onerous in ME/CFS studies since, thanks to organizations like the CDC, patient populations are bloated almost beyond recognition with people who don't have ME/CFS. These would be replication efforts - if there have been any - that most likely would be doomed to fail for the same reasons most ME/CFS replication efforts fail -- piss-poor cohorts distended with irrelevant weight to a point of uselessness.

    So who do I lean toward? Clinicians who deal almost exclusively with ME/CFS patients. Theirs might not be RCTs, but at least what data they are garnering is more likely to accurately reflect the proper population.

    We still are confronted with a dearth of good information. More respectable research with proper cohorts is needed.
     
    Last edited: Jul 3, 2016
  16. ebethc

    ebethc Senior Member

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    Duncan, you bring up good points... specifically, poorly designed tests, one of my personal pet peeves... I think we're on the verge of changing this, but it's just not here yet

    What are RCT's?
     
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  17. duncan

    duncan Senior Member

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    RCT = Randomized Controlled Trial
     
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  18. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Judging from the website Quest is a private commercial set up. I am not sure what mainstream means in that context - maybe successful at selling stuff? A lab that sells a 'Th1/Th2 balance' test is happy to sell meaningless nonsense so I would personally be sceptical about any of their results. Sadly I think there are huge businesses selling this sort of stuff to peopler easy to buy.
     
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  19. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    ME/CFS researchers are still interested in trying to see if there really is any difference in NK function but I am not sure in what sense 'knowledgeable clinicians' are interested. There is no point in them asking for a test as part of patient management when nobody knows what it might mean or whether it is even relevant.

    When I say the NK function deficit has not been replicable I amanita talking about cohorts that do not have ME/CFS. The researchers I know who have been unable to replicate the finding use as strict criteria as the original studies. The argument that studies are no good because they have the wrong patients I simply do not buy. And I see no reason to insult researchers with terms like piss poor cohorts when you have no knowledge of who the researchers are or what criteria they use. The study underway with NIH funding in London at present is as rigorous as any in terms of cohort selection. It will be interesting to see if they can replicate the NK function deficit.

    Why should clinicians dealing almost exclusively with ME/CFS have the 'right population". Surely they will have masses of these people who 'do not actually have ME/CFS but think they do' referred to them? To my mind the proper way to do the science is to use a raw population based cohort with as little selection bias as possible - run by an expert team of ME/CFS researchers with no vested interest in selling patients any particular treatment.
     
  20. duncan

    duncan Senior Member

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    By this logic, early researchers and clinicians who spotted a bulls-eye rash on many Lyme patients should not have taken note. But some ME/CFS experts believe low NK cell function is reflective of a disrupted immune system. Are they correct? Let's do some proper research to find out.


    You don't buy some studies are no good because the cohort is wrong? Really? I don't know how to respond to that. This is basically the history of a large part of ME/CFS research. Naturally, I am not saying ALL researchers employed piss-poor cohorts, but some have, and, well, there you have it.

    Why should they have the right population? In a word: experience. Because they know how to distinguish chronic fatigue from ME/CFS, they know where PEM fits into the equation (and why it must), and they know to look for certain commonalities such as POTS and - wait for it - low NK cell function values.(There's a circular argument lurking here for both of our stances, but I do think experience should count for something so long as it is guided by integrity.)

    "...run by an expert team of ME/CFS researchers with no vested interest in selling patients any particular treatment." Agreed. Agreed, too, about avoiding selection bias. You've a large budding crop of such researchers in the UK?
     
    Last edited: Jul 3, 2016
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