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Have Scheibenbogen, Light, and Bergquist already cracked ME/CFS etiology?

Discussion in 'General ME/CFS Discussion' started by Jesse2233, Aug 14, 2017.

  1. anni66

    anni66 mum to ME daughter

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    Wow- it really is a different world in the US
    Our paediatrician won' t even do an active B12 test ! She didn' t know thatvthere was such a thing....
     
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  2. Learner1

    Learner1 Forum Support Assistant

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    I think what we heard this weekend is that we could develop all kinds of antibodies, so having not found them yet doesn't mean you have none.

    Sounds like you are getting good help and maybe you'll be able to teach us something. I was very impressed with Neil McGregor this weekend...
     
  3. Gingergrrl

    Gingergrrl Senior Member

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    Rossy, do you know which autoantibodies they looked at on the panel that your doctor sent to Oxford? I really wanted to be tested for auto-abs at Oxford but it was a dead-end and I just couldn't figure out how to do it from the U.S. and gave up!

    Thank you so much and I really appreciate it! Best wishes to you as well.

    I agree that having not found them yet does not mean that they are not there. I have heard several people say that Dr. Angela Vincent in the U.K. is discovering new auto-antibodies every week. I think they are pretty much endless and if I have eleven that we know of, I can't even imagine what others I might have that we do not know of!
     
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  4. Jesse2233

    Jesse2233 Senior Member

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    I need to learn more about Dr Vincent.

    We can also look at this through Naviaux's model of a general genetic predisposition to a stuck purinergic response with different symptoms based on immunological idiosyncrasies (one of those being the CellTrend cohort)
     
    Last edited: Aug 15, 2017
  5. Learner1

    Learner1 Forum Support Assistant

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    That's what Mark Davis was describing... We have an endless ability to make antibodies.

    I don't doubt that we could have some exotic antibody creating weird symptoms... On the other hand, I suspect the important task is to find some and then treat the auto immune problem... Seems to be the same set of tools in any case... Not sure we need to find every last one.
     
  6. Gingergrrl

    Gingergrrl Senior Member

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    I totally agree w/you 100% @Learner and my doctor said there is no point looking for additional autoantibodies in my case b/c it would not change my treatment plan of IVIG & Rituxan.

    I do wonder though if there are specific autoantibodies that could be of use diagnostically or treatment wise (i.e. knowing I have the calcium autoantibody led to lung cat scans b/c of the high correlation to small cell lung cancer) and led to testing for LEMS.

    It could clarify if ME/CFS is really my diagnosis vs. something else but regardless it would not change my current tx plan.
     
  7. dreampop

    dreampop Senior Member

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    Didn't he say it was just 20% of people with CFS?
     
  8. Kenny Banya

    Kenny Banya Senior Member

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    EDIT: just noticed you got these tests done at Oxford
     
    Last edited: Aug 15, 2017
  9. Kenny Banya

    Kenny Banya Senior Member

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    Off the top of my head, EBV, but that's nothing special
     
  10. pattismith

    pattismith Senior Member

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    I wonder if I will do the celltrend test for CFS (cheaper) or the full test for POTS...

    I don't know if I have POTS, because no-one tested me for that in my country... But I'm sure I have orthostatic intolerance because I feel often sick when I stand up too quickly. This was increased when I was taking vasoconstrictors to give me energy (cafeine, ephedrine...).
    I also had once a bad head spin when I was in my worst time with strong pains and fatigue... this time I visited the doc, he said there was nothing really wrong and gave me Gabapentine, but I couldn't take it more than one day (strange side effect)...


    Thank you for sharing! Would you tell us if you do have POTS?
     
  11. adreno

    adreno PR activist

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  12. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Please note that this is in no way a diagnostic or clinically useful test. The differences between ME and controls found by Scheibenbogen are only statistical and not very big. They do not look like the sort of differences we see for autoantibodies in lupus or RA etc. They are slight differences in proportions.

    What this means is that a test on single patient means absolutely nothing. Please realise this. I would not waste money on a test that cannot be diagnostic in its present form.

    Unfortunately it is standard for test findings like this to be replicated by a few other labs before the dust settles and everyone realises there is at best a tiny clue that might produce something with more work.

    One of the things that worries me is that there are two sorts of antibodies involved. I am unclear how you get the same set of symptoms from interfering with two different receptors. There are other diseases where more thane antibody is involved but the results are much more clean cut there.
     
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  13. Gijs

    Gijs Senior Member

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    I have heard that the patiënts from Light have been tested in the same laboratory in Germany, so they didn't test the bloodsamples in their own laboratory. I also know that some patiënts have been tested twice in Germany with different outcomes.

    Professor Edwards, Is it correct that also healthy people have some low levels of autoantibodies without any disease?

    I think that the high levels of TGF b found in the blood is much more significant. Do you agree with this? I would put my money on this finding.
     
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  14. Rossy191276

    Rossy191276 Senior Member

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    Gingergrrl I am not sure off the top of my head the antibody my neurologist sent for but will confirm will report results when I get them

    Learner I can say in talking to my doctor who is working closely with Neil McGregor that McGregor was understandably very understated in the way he presented the genetics findings and privately they are very confident they have uncovered an important piece of the puzzle.. it didn't come across in the presentation but they have actually classified seven suptypes of genetic clusters from that study with what they consider very strong results (they were amazed at the data) and will now look to replicate...
     
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  15. jimmy86

    jimmy86 Senior Member

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    I heard the same. Also my German doc thinks celltrend is not reliable.

    I have been tested twice for these antibodies. Once by cell trend, the other by a German university hospital because of my POTS. Both times negative.
     
  16. Art Vandelay

    Art Vandelay Senior Member

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    That's interesting stuff, @Rossy191276 . I've also had very high ferritin and high homocysteine. You're the first person who I've come across with the same results.

    My ferritin is now consistently under 500 (which is considered normal range by one lab although another says the upper limit should be 250) and my homocysteine went down to normal levels with folinic acid supplementation.

    I've either been told that these results are a sign of inflammation or infection (I have positive tests to d.fragilis and positive IgMs for borrelia) or have been referred to specialists who don't know/care.
     
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  17. Hip

    Hip Senior Member

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    You can call it nothing special, but if that were me, I'd be considering Dr Lerner's protocol, using Valtrex to lower EBV titers, which his published studies showed led to improvements in ME/CFS symptoms after several months.
     
  18. JamBob

    JamBob Senior Member

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    @Art Vandelay and @Rossy191276

    Have you guys with high ferritin had haemochromatosis ruled out as a cause? My mum found out she had it from a 23andme test and there are loads of younger guys on her forum. It's easily treatable but if you don't know you have it, damage (from excess iron) occurs over time to all kinds of organs.
     
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  19. Art Vandelay

    Art Vandelay Senior Member

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    Yes, I've been tested for it twice and apparently I don't have it. It was good that it was picked up in your Mum's case!
     
  20. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    As far as i could see normal people have just as high antibodies as patients. The proportions of high values may be a bit less but it is not that different. most individuals in both groups come out negative on most of the tests. For rheumatoid factor about 80% of patients are positive and about 10% of normals. We are not looking at a difference anything like that.

    I agree that the repeated suggestion that TGFbeta is high may be a more promising lead, although I do not discount the antibody results being an indirect indicator of something else that may come to light in time.
     
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