The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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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. Jesse2233

    Jesse2233 Senior Member

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    At the OMF symposium, Drs Alan Light and Jonas Bergquist both independently confirmed the presence of adrenergic and muscarinic receptor autoantibodies in their patients (vs controls). Although their studies have yet to be published, their research effectively replicates that of Dr Carmen Scheibenbogen and indicates an autoimmune etiology.

    Of course other autoantibodies have shown up in previous studies, and there's still the issue of a chronic pathogen / dysbiosis potentially causing these autoantibodies (and the downstream effects on cytokines and metabolism).

    But adrenergic and muscarinic receptor malfunctioning can plausibly explain many of the core orthostatic and neurological symptoms.

    The good news here is that autoimmune treatment protocols should apply well. This seems to be true given the reports from Scheibenbogen group showing improvement following immunoadsorption and IVIG, and Fluge / Mella's trials of Rituximab and Cyclophosphamide.

    From Dr Light's slides:

    upload_2017-8-14_12-5-17.png

    From Dr Bergquist's slides:

    upload_2017-8-14_12-4-35.png



    And from Dr Scheibengoen's study:

    upload_2017-8-14_11-44-6.png
     

    Attached Files:

    Last edited: Aug 14, 2017
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  2. Gingergrrl

    Gingergrrl Senior Member

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    Thanks for posting this and I did not get to watch the seminar b/c I was at IVIG the entire day. The description above is the subgroup or illness that I have. If this turns out to be what ME/CFS is (adrenergic and muscarinic/cholinergic autoantibodies and the treatment is to knock them out with IVIG and Rituximab), then this is indeed the illness that I have. Versus if it turns out to be something different, than I do not have ME/CFS and I have the "Light, Berquist, Scheibenbogen Disease" LOL.
     
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  3. anni66

    anni66 mum to ME daughter

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    Can someone explain in plain english ehat these are and what they do ? Thanks
     
  4. Jesse2233

    Jesse2233 Senior Member

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    They are autoantibodies that attack receptors on cells that control bloodflow in the body and brain

    You can get them tested through a German lab called CellTrend
     
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  5. Jesse2233

    Jesse2233 Senior Member

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    ah yes LBSD, nothing that the Davis Naviaux Fluge protocol can't fix
     
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  6. pattismith

    pattismith Senior Member

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    thank you for the lab name, I was just looking for one that could test me :)
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    I am glad you answered that question b/c even though I basically understand this, I find it hard to explain to others. Would you say that the autoantibodies also attack autonomic functioning (POTS) and muscle strength (in addition to attacking the receptors that control blood flow to the body and brain)?
     
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  8. Kenny Banya

    Kenny Banya Senior Member

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  9. perrier

    perrier Senior Member

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    is the testing reliable? Is it expensive? Can blood be sent from North America?
     
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  10. Jesse2233

    Jesse2233 Senior Member

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    Yes I think they're very plausibly implicated in POTS. I'm not sure on muscle weakness, perhaps the muscarinic ones
     
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  11. Kenny Banya

    Kenny Banya Senior Member

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    Do you get head spins when you stand up sometimes?
    POTS may well mean you have a weak pulse pressure, which is compensated for by an increased heart rate on standing. The head spins occur because insufficient blood has reached the brain in the second or two on standing, upon which the heart increases to catch up & the dizziness stops. My guess is these autoantibodies inhibit correct signalling from the neurotransmitters to the heart to pump at the correct pressure.
     
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  12. Kenny Banya

    Kenny Banya Senior Member

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    I am pretty sure @Gingergrrl had her blood sent there
     
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  13. Jesse2233

    Jesse2233 Senior Member

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    I am in Los Angeles and had no problems sending it to Germany. I imagine the same could easily be done from Canada

    My understanding is that CellTrend is reputable given their ISO certification and anecdotal consistency in results

    The cost is $460 USD, I was fortunate that my insurance (Blue Shield PPO) covered it, but I've heard that is not often the case
     
  14. perrier

    perrier Senior Member

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    Now that you have the tesul
    Thanks. Now that you have the result,what can you do with it. This it mean you are a candidate for RTX. In this connection, I am told that the patients doing RTX in the USA are not replicating the Norwegian results. Is this true?
     
  15. Kenny Banya

    Kenny Banya Senior Member

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    So many people focus on post viral fatigue as the beginning of ME/CFS that they forget many (like me) never started that way. Mine was possibly due to dysbiosis & leaky gut. Remember that neurotransmitters are manufactured in the gut. Melbourne University & CFS Discovery are focussing on this as the source.
    Pertinently, I have just now posted an article about fecal microbiota transplants.
     
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  16. anni66

    anni66 mum to ME daughter

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    Thank you.
     
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  17. barbc56

    barbc56 Senior Member

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    Would this be considered a pilot study?

    Control group?
     
  18. Gingergrrl

    Gingergrrl Senior Member

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    IMO it is reliable. It is fairly expensive although the prices may have gone down from when I first did the test over a year ago. And you can send the blood from anywhere in the world as far as I know.

    I am also in Los Angeles like Jesse and had no problem sending the blood samples to Germany.

    My doctor felt the adrenergic autoantibodies showed that I have "autoimmune POTS". My own instinct is that the muscarinic/cholinergic auto-abs cause the muscle weakness but b/c I also have the calcium autoantibody (that links w/LEMS) it is hard to know for sure.

    I do not get head spins or dizziness even though this is one of the first questions that doctors ask me! I had a very low/weak pulse pressure prior to IVIG and also had hypotension in general. My issue when I stood/walked was dyspnea and if I pushed it, it led to chest pain/angina. Luckily this is much better for me now.

    Wow, you got your insurance to cover the Cell Trend tests?!!! That is amazing. Since I was trying to get them to cover IVIG and Rituximab (and they did), I did not even bother with trying to get the Cell Trend tests covered and just paid for them myself.

    It does not make you a candidate for Ritux but it certainly would show that you have autoimmunity. For me, the Cell Trend auto-abs combined with other autoantibodies, a positive ANA titer, etc, and then an extremely positive response to the autoimmune dose of IVIG, was all evidence that I could be a good candidate for Ritux. My doctor is using the autoimmune protocol, which is well established for RA and other autoimmune diseases, (vs. the currently experimental protocol of Fluge and Mella).
     
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  19. Hip

    Hip Senior Member

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    Have you been tested to see if you have any active chronic infections with the viruses commonly linked to ME/CFS (coxsackievirus B, echovirus, EBV, HHV-6, cytomegalovirus and parvovirus B19)?

    Viruses can enter the body relatively asymptomatically, so you don't necessarily have to have an obvious acute infection (like say gastroenteritis) in order to catch an ME/CFS-triggering virus.
     
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  20. lnester7

    lnester7 Seven

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    There is subgroup with autoimmunity for sure. I wonder if the subgroup with POTs have other antibodies.
     
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