Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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The spread of EBV to ectopic lymphoid aggregates may be the final common pathway in the pathogenesis

Discussion in 'Latest ME/CFS Research' started by Kati, May 11, 2017.

  1. Snow Leopard

    Snow Leopard Hibernating

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    This seems like the same-old hypothesis. Some patients had never had EBV at the time of their diagnosis, so at best this could only explain a subset. The explanation seems far too speculative for me to get excited about at this stage, though I may be swayed with high quality data.
     
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  2. Rossy191276

    Rossy191276 Senior Member

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  3. Snow Leopard

    Snow Leopard Hibernating

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    Overall similar patterns to healthy controls (similar patterns of immune response to EBV and reactivation patterns). Some types of reactivity in patients were notable, with a hypothesis of molecular mimicry, but when immune responses were tested against those endogenous proteins directly, no unusual immune response (that could be explained by molecular mimicry) was found.

    So overall: a null result. But it is an interesting, high quality study definitely worth reading.
     
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  4. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    I dont get why this is being shared around. It`s a complete stab in the dark, let`s discuss when there is something to discuss on.. :)
     
  5. Murph

    Murph :)

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    This is totally true, but it is also true that there is an infinite amount of data you could collect on a CFS patient. Money is limited. Time is ticking. Knowing what you want to measure is seriously important.

    An iterative process of data and theory - and an evolving group of insiders and outsiders contributing to the process - is likely to provide the right kind of impetus. This theory is terrific because it is plausible and falsifiable. And if it is not falsified, there is a clear path of action available.

    If the nerves don't have the clumps of immune cells ('ectopic lymphoid aggregates') that he postulates, the theory is basically dead. If they do, he may be onto something, including a potential treatment or even cure:

    If serious researchers put enough weight on the theory to test for the lymph lumps, then the theory will have been useful!
     
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  6. Forbin

    Forbin Senior Member

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    I was tested for EBV about a month after post-infectious onset. The result showed that I'd never been infected with EBV, which I guess is somewhat unusual in itself (although I was only in my early 20's, and so still might have been exposed eventually). In recent years, someone suggested to me that the result might have been a sign that my immune system was unable to make antibodies to EBV, but I feel like that explanation probably falls on the wrong side of Occam's razor.
     
    Last edited: Jun 12, 2017
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  7. Alvin2

    Alvin2 If humans were rational...

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    This theory is not excellent, its one or two steps above quackery. For example notice how many alternative medicine enthusiasts are obsessed with chronic candida infections (even when its undetectable) and homeopathy, despite the lack of evidence supporting them and mountains of evidence against them. People become wedded to their theories easily, especially when here is no science either way and often even when disproven by legitimate science. Another example, PACE is not legitimate science, its an obvious fraud that the journal is being publicly irrational in protecting.
    I can theorize that ME/CFS is caused by proto arthritis, cherry pick some evidence and make some pseudo scientific comments supporting my theory. It will fall flat when money and time is wasted. Being able to filter fluff from legitimate possibilities is a talent.
     
  8. Forbin

    Forbin Senior Member

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    I'm about as far from an alternative medicine guy as you can get, but I wouldn't lump candida/fungi in the gut in with homeopathy. I'm not referring to potentially deadly "invasive candidiasis" of the blood, heart, brain, etc. Rather, when I say "candida," I'm referring broadly to the fungal component of the microbiome (which I don't think can be quantified by a routine test).

    Ian Lipkin apparently suspects that fungi may be a problem in some ME/CFS patients.
    http://simmaronresearch.com/2015/12...ears-to-solve-chronic-fatigue-syndrome-mecfs/

    Dr. Hornig also mentioned that the CII would be looking at fungi in ME/CFS for the first time ever.
    http://simmaronresearch.com/2016/06...tigue-syndrome-mecfs-project-dr-hornig-talks/
     
  9. Alvin2

    Alvin2 If humans were rational...

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    I understand what your saying and its reasonable that there might be immune factors involved somehow given the evidence in many studies, but saying someone has clumps of immune cells infected with EBV and thats the cause is not very likely.
    There are probably thousands of snake oil ME/CFS theories on this forum, if we believe all of them we will get nowhere and many are contradictory :confused:
    In science one theorizes and attempts to prove or disprove the theory and hopefully that leads to better theories and to discoveries. Is this the one, unlikely, is it worth investigating, perhaps, which is why i mentioned earlier is anyone making sure Dr Davis hears about new theories though the resources to investigate the credible ones is stretched very thinly.
     
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  10. Forbin

    Forbin Senior Member

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    Without seeing the paper, this EBV hypothesis does seem like chain of inference.
    Is this known to happen? Without Step 1, you can't get to steps 2 & 3.
     
  11. Murph

    Murph :)

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    I agree with you on this! I'ma skeptical person and I like to think in terms of probability. I think this theory is worth exploring, rather than definitely true. As I said above

    Given the two most curious features of ME/CFS : it starts by infection but there is no evidence of ongoing infection - it is worth looking at all places infections might hide/ cause ongoing problems. Including ectopic lymphoid aggregates. They are a real thing and they are associated with glial activation, which is certainly a possible explanation for ongoing immune activation.
     
    Last edited by a moderator: Jun 12, 2017
  12. Valentijn

    Valentijn Senior Member

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    Same here, though mid-30's in my case.
     
  13. Jill

    Jill Senior Member

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    Nancy Klimas did a proof of concept autologous infusion which improved patients. I'm not sure what she did to the cells , but from memory she grew up whatever was low. It was back in the early nineties I think. I have no idea why it wasn't pursued. It made total sense to me at the time ( not that I understood it). But patients did improve. It may have been a problem that they would need to continue doing it. Someone should try to dog it out or ask Nancy about it
     
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  14. Barry53

    Barry53 Senior Member

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    But just because only EBV is known to be implicated so far, does that preclude the possibility of other infections doing similar?
     
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  15. Snow Leopard

    Snow Leopard Hibernating

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    Me too. I've been tested for EBV on no less than three occasions in two different countries (two were antibody tests, one was PCR). All were negative.

    I might have caught it since then though.
     
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  16. TenuousGrip

    TenuousGrip Senior Member

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    I was wondering about this before I got to your post. Is a standard IgG test absolutely going to rule in/out prior EBV exposure or are there false negatives.

    Last week, I had the Streptococcal Pneumoniae AB IgG (23 sera) test. If the results are to be believed -- in my sixth decade -- I've never been exposed to strep.

    But of course I have. It's (in my case, another) an immune defect/deficiency.

    I know that precious little is known. I always hope that -- in aggregate -- the researchers are asking all the right questions, and constantly questioning their own assumptions.
     
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  17. TenuousGrip

    TenuousGrip Senior Member

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    I think that's an important question, too: is it an EBV-specific problem, or a much broader immune defect ?
     
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  18. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Similarly, I tested negative for HHV-6. I find it hard to believe I've never been exposed to it.
     
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  19. Learner1

    Learner1 Forum Support Assistant

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    Yes, there are false negatives. I've been tested several times for EBV, results all negative, then just got results back with very high VCA and PCR, with the others still negative. My experienced doctor says he's never seen this pattern of results, but that I definitely have it.
     
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  20. Anne

    Anne Senior Member

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    I'm just a layperson and I haven't read the paper, so forgive me if this is naive/basic/plain stupid :)

    My understandning was that EBV lived in B-cells, and B-cell depletion through rituximab would kill EBV present in the body. So why would reprogramming of T-cells be needed? Wouldn't a way to test his theory be to treat with rituximab?

    Or is he saying that EBV is harboured elsewhere (not B-cells)?
    Or that rituximab doesn't kill off enough B-cells?

    (If I understand things correctly the ME patients in the ritux studies who got better did not do so in a way which suggested EBV was the culprit - in the EBV cases, the patient gets really ill for a couple of days after the infusion and then gets dramatically better. ME patients, on the other hand, seemed to have a similar reaction as patients with autoimmune disease where it takes a number of months for autoantibodies to die off.)

    @mango
     
    Last edited: Jun 13, 2017
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