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Debates on ME in Dutch Parliament May 14; & Lyme May 15

Discussion in 'Upcoming ME/CFS Events' started by Sushi, May 10, 2014.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Glad you made it there Justy--thanks for reporting in with only 3 hours sleep! :(

    Yes, when I've been in KDM's office, most of the patients were not on forums--at least the English language forums. Though I have also met several members of this forum there--which was very nice. So, looks like it is true, we are only getting reports from a minority of patients who both have ME/CFS and are being aggressively treated.

    When KDM said that 95% of his patients are now testing positive for some type of bacterial infections, this probably reflects the better testing that has become available in just the last year or two.

    These are probably a group of very nasty and persistent intracellular infections that not only cause symptoms themselves but (as Sergio said above--[he is a medical student, BTW, gone from housebound to the classroom]):
    I don't think the finding that 90-95% of one specialist's patients are positive for one or more of a group of intracellular infections in any way questions the reality of ME/CFS--it just adds another clue as to where to look to discover the mechanisms that have wreaked such havoc on a percentage of our bodies. Even if this research pans out, it is not looking like a 1,2,3 simple chain of causation but like a cascade of very complex changes that, over time, lead to such physical and cognitive impairment.

    I am one of those who is positive for at least one of these infections and I have begun to treat it, but there has been no guarantee or even suggestion that by beating down this infection, I will be well--it is more complex--but I am hoping that this is a step towards stopping the cascade. Other possible steps are presently under research, but as Rich has said, treating the terrain (in this case intracellular infections) is a necessary step.

    Best,
    Sushi
     
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  2. justy

    justy Senior Member

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    Luckily I managed to get them to change my room tonight to a quitter one - I honestly could have gouged my ears out at one point!

    Appt went very well, will post new thread to let everyone know at some point soon.
     
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  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    A report of the Dutch Parliamentary debate on ME has just appeared in a Dutch newspaper. I used Google Chrome to read it and will paste in the translation from the Dutch--obviously a poor translation but, I hope, better than nothing! :rolleyes: For anyone who can read the original, your corrections would be most welcome! The first quote is by Prof. De Meirleir, but there is much more in the article. You can see the full article here.

    And, from Dr. Hans Klein, a psychiatrist and researcher working at the University Medical Center Groningen who characterized ME:

    And again from Prof. De Meirleir:

     
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  4. Jemal

    Jemal Senior Member

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    Has the revolution started? I wonder.
    A Dutch psychiatrist doing PET scans and finding inflammation. The hospital in Nijmegen, always promoting CBT, now doing trials with anti-inflammatory medication (they were recruiting a couple of months ago)?

    We have a long way to go, but I think the balance is tipping.
     
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  5. paolo

    paolo LyM.E.?

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    Now thta one year has passed since that debate in Dutch Parliament, has this statement (about connection between CFS and Lyme) been confirmed? Does KDM still defend his opinion that 95% of CFS patient are Late Lyme? How are his patients doing?

    Million dollars questions, I know.
     
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  6. Gijs

    Gijs Senior Member

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    I don't believe 95% of CFS patiënts have late stage Lyme, it is just like XMRV the next big HYPE! Still i don't see any publication of professor Meirleir. The LTT test doesn't prove Lyme at all. But the test is interesting because many people with CFS test positive. I would like to know why. Maybe this test can confirm ME :)
     
  7. paolo

    paolo LyM.E.?

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    Why do you say that? I'm trying to study this test. Do you know of any valuable pubblication about its use in Lyme? Thanks.
     
  8. Valentijn

    Valentijn Activity Level: 3

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    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3474945/ indicates it's very accurate in detecting Lyme or the absence of Lyme in known serologically positive and negative samples.

    Gijs flatly disagrees with any theory regarding ME/SEID which is not compatible with his own theories. I would not expect an explanation for his disagreement, based on extensive past experience.
     
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  9. Cheshire

    Cheshire Senior Member

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    What happened after these debates? Does someone know if it lead to anything, or had any tangible effect?
     
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  10. paolo

    paolo LyM.E.?

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    I know this publication, although I wasn't able to read it entirely, cause of my current brain fog...

    I guess that the problem with this work -which is nevertheless remarkable- is that it can't say if LTT can differentiate Lyme from other infectious diseases. If you see, the control group is only of healthy persons or people with autoimmune diseases.

    In other words the question is: is LTT positive also with other infections, both viral or bacterial? If the answer is yes, it can't detect borrelia in CFS population, which likely harbours many pathogens, as many studies have been demonstrating since the very beginning of CFS history.

    Other question! Is the LTT in this study the same that KDM uses with his patients?

    Thanks so much, Valentijn!
     
    Last edited: Apr 22, 2015
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  11. Gijs

    Gijs Senior Member

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    Yes, it is the same test. The abnormal immunerespons from CFS patiënts with LTT test is very interesting. Why does our immune system respond to this test and not in healthy people? I would like to know. It doesn't prove Lyme but something else.
     
  12. Valentijn

    Valentijn Activity Level: 3

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    It's not something I really know anything about, but I think it would be extremely unlikely that a test for a bacteria would cross-react with a virus. They are very different entities.

    But in the discussion, the researchers say: "Of great importance are the selection and especially the dosage of the Borrelia test antigens. Lysate antigens, kindly provided by Seramun (Heidesee), were specially purified for the ELISA test and showed no positive reactions with negative control sera. Nevertheless, the presence of Borrelia-nonspecific proteins in the lysates that may cross-react with other bacterial species may be unavoidable."

    Basically the test has cross-reactivity with other borrelia subspecies, which is probably a good thing, since it will pick up strains which can infect humans but are not detected using the CDC or other methods. But they're conceding that it is possible that it might cross-react with other non-Borrelia bacteria. This is also a problem with other tests - on the one which uses bands, some bands merely indicate certain characteristics of the bacteria, etc, which certainly are shared with other bacteria.

    Yes, though in a clinical setting the lab uses a result of 2 as the cut-off instead of 3. This makes some sense, as additional data can contribute to a clinical diagnosis, such as symptoms and other lab results which suggest the presence of Borrelia.
     
    Last edited: Apr 22, 2015
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  13. paolo

    paolo LyM.E.?

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    But it's well known that EBV can cross-react with borrelia antibodies. In other words EBV and borrelia share some common antigens, even if they are two profoundly different organisms.

    Nevertheless -scrolling down the article- I've found these considrations about my concern of cross-reactivity:

    "Nevertheless, there are still gaps in the validation that we conducted. For instance, it was only possible in individual cases to examine patients with active syphilis (n = 3) or leptospirosis infection (n = 2) for potential cross reactivity. In these few cases, there was no evidence of such cross-reactivity in the Borrelia-LTT. Allergies, autoimmune diseases and acute, persistent and latent viral infections (including HIV, EBV, CMV, VZV) have now been excluded, by further investigations, as a possible cause of false-positive reactions (unpublished data)."

    So they were able to exclud cross-reactivity with syphilis and leptospirosis, but only in a very small number of cases (3 for syphilis and 2 for leptospirosis). Too low this number of patients to have some genuine prove against cross-reactivity, I guess.

    They also say that -according to unpublished data- it has been excluded false positivity in the following conditions:
    • allergies;
    • autoimmune diseases (which were also in the control group);
    • acute and persistent HIV, EBV, CMV, VZV.
    Sfortunately those data are unpublished, so that we can't say anything about them.
     
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  14. Valentijn

    Valentijn Activity Level: 3

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    Is this published somewhere?
     
  15. paolo

    paolo LyM.E.?

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    You can read this paper:

    http://cid.oxfordjournals.org/content/41/12/1826.full

    Here it is an abstract:

    "False-positive results of serological tests for Lyme disease have been reported in cases of recent primary infection with varicella-zoster virus, Epstein-Barr virus, and cytomegalovirus. We report the first association of false-positive results of serological testing for Lyme disease with infection due to another of the herpesviruses, herpes simplex virus (HSV) type 2."

    On the other hand I know of a case in which borrelia induced transient EBV antibodies.
     
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  16. Valentijn

    Valentijn Activity Level: 3

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    It sounds like this only happens during the early stage of either infection. Within weeks of symptom onset, there is some IgM cross-reactivity in ELISA testing, but that disappears.

    There's also no indication that this happens with the Elispot-LTT, or other Lyme tests. Though it sounds like they don't know why the two cross-react on IGM in early stages, so it can't be ruled out that other tests cross-react at the same stage.

    But needless to say, by the time an ME patient is getting diagnosed with Lyme or any other infection, they are well past the acute stage :p So I don't think IgM false-positives to EBV would generally be relevant in the case of ME/SEID, except potentially very shortly after onset when none of us are being tested for anything useful yet anyhow.
     
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  17. NK17

    NK17 Senior Member

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    @paolo and @Valentijn IGeneX Western Blot labs results states under LIMITATION: (…) Some viral antibodies cross-react with 31, 41, 83-93 kDa

    I think that something has been going on between some Herpes viruses, gram negative bacteria and possibly HERV (endogenous retroviruses, those which are part of our genome).

    There's an urgent need to see the forest, which is made up by trees ;).
     
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  18. paolo

    paolo LyM.E.?

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    There is cross reaction, because many organisms on earth share common proteins or lipoproteins. For the same reason you can produce antibodies that cross react with your own tissues: because the bacteria or virus that is infecting you, shares with your body some antigens. This mechanism is called 'molecular mimicry', and is well known.

    So, for some tests it is possible a false positivity.
     
    Last edited: Apr 24, 2015
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  19. Hip

    Hip Senior Member

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    Given that many ME/CFS patients have chronic reactivations of herpes family viruses, might this make them prone to false positive Lyme tests?
     
  20. Valentijn

    Valentijn Activity Level: 3

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    No, the the cross-reacting one is IgM, and that's the one which should be negative with EBV reactivation. Unless our immune systems are doing something really whacky :alien:
     
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