Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Plasmapheresis study at Berlin (Charite Prof Scheibenbogen)

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Freddy, Apr 30, 2016.

  1. Freddy

    Freddy

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    At the Charite (Berlin) there is currently underway a study on plasmapheresis in patients with CFS at the immonology group of Prof. Scheibenbogen.

    I am a participant in this study and want to share my experiences.

    The study is based on the observation that they found in a subgroup of patients elevated autoantibodies. They are in constant exchange with the group in norway studying rituximab.
    See also:
    http://forums.phoenixrising.me/index.php?threads/antibodies-to-ß-adrenergic-and-muscarinic-cholinergic-receptors-in-patients-with-cfs.40109/
    http://linkinghub.elsevier.com/retrieve/pii/S0889159115300209?via=sd

    The study is conducted in collaboration with Fresenius Medical Care who contribute the filters and have experience in plasmapheresis in autoimmune conditions. 7 to 10 patients will be finally included based on the outcome of the first patients. They have chosen the candidates based on autoantibody and symptom level. As far as I understood the goal is to radically deplete the level of antibodies to ß adrenergic and muscarinic cholinergic receptors, see whether there is symptom relief and therby exploring whether these antibodies play a causative role in pathogenesis. Plasmaphersis was applied on 3 consecutive days, then 2 day break (weekend) followed by 2 more days of therapy, and finally IgG substitution. The latter is due to the fact that
    all IgG antibodies were depletd ("good" and "bad" ones) and they wanted to restore some level of immunity.
    At the end of day 5 my IgG level was below detection threshold.

    Additionally, in my layman words, there is the speculation that by depleting the antibodies radically, a evolutionary stress is applied to the B cell generations thereby causing sort of "reset" similarly to rituximab. Probably I will be in an addtional 5 day course of plasmapheresis with the goal to further apply a reset. But this will depend on testing in 4 weeks.

    I was told that they found so far a response in 3 out of 4 persons, mostly a rather transient one, which fits to the fact that antibodies will be replaced. My personal experience was a significant improvement in vision, less dizziness, and two weeks beeing less fatigued, less lymph node pain. It was quite difficult to assess, because I had a convalscense of a flu which always causes a worsening of my CFS symptoms...
    Altogether I would say I had moderate response (at very least the moderate effectiveness the PACE trial claims!) But, we don't rely on subjective outcomes, I wear an actimeter one week each month, results pending.

    Finally, even if the result comes out as only a transient one, this study could help to establish or falsify a causal link of symptoms and autoantibodies in a group of us. This conclusion would not be limited to the specific autoantibodies mentioned above but to autoantibodies in a more general sense, as long they are sensitive to the filter (i.e. IgG).

    I'm grateful to be part of this endeavour. Hope to see the results published, but my guess is not before mid 2017.

    Many thanks to the group of Prof. Scheibenbogen!
     
    Last edited: Apr 30, 2016
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  2. LiveAgain

    LiveAgain Senior Member

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    Were you positive for the autoantibodies and if so, may I ask which ones? Also, do you know all of the ones they tested for? And finally, do you have POTS or any form of orthostatic intolerance/ dysautonomia? Thanks for sharing your experience and I hope the treatment helps you.
     
  3. Freddy

    Freddy

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    I was positive for the "antibodies to ß adrenergic and muscarinic cholinergic receptors". They told me i was in the top 5 percentile, this was the reason for my inclusion. I dont know what else they tested for, but I think their strategy was described in http://linkinghub.elsevier.com/retrieve/pii/S0889159115300209?via=sd
    Clicking on the buttons down the page opens a view...
     
    Last edited: May 1, 2016
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  4. LiveAgain

    LiveAgain Senior Member

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  5. Hip

    Hip Senior Member

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    Very interesting research, @Freddy , thanks for posting it.

    The idea of using plasmapheresis to test whether the symptoms of ME/CFS are caused by autoantibodies is a brilliant one. I'd never come across this technique before.


    In this post there is a table showing the various autoantibodies found in ME/CFS and some comorbid conditions.



    It's here.
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    @Freddy Thank you for sharing this and I would love to talk to you via PM as I am positive for some rare auto-antibodies (confirmed via blood tests) and I cannot find anyone in the US who is able to order plasmapheresis for me even though it was recommended to me by the doctor who found the antibodies.

    I am certain that if I could tolerate this procedure, I would be the perfect candidate for this study. I am looking at IVIG and RTX (which are within the realm of possibility) but literally the option of plasmapheresis only seems to be done for cancer patients here.

    Do you know if there will ever be a study like this in the U.S. or if non-German patients can be in the study? I wasn't sure if they still need more people or if the study is over? I would try this in a heartbeat if given the opportunity and want to see if reducing the auto-antibodies can help specific symptoms that I have which have been worsening at a fast pace.

    ETA: Freddy, I just sent you a PM to discuss this further. It appears that PP in Europe and Japan is very different than that in the US. It seems very uncommon in the US outside of oncology units and only seems to be done as full plasma exchange.
     
    Last edited: May 1, 2016
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  7. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Thanks for the detail on your study. You mention flu - is this something that you have frequently? How long have you had ME/CFS?
     
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  8. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    This is a very exiting procedure, so thanks for sharing! Did your PEM improve at all?
     
  9. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    By the way, do the autohors take into account that the IgG-substitution could potentially cause symptom relief as well?
     
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  10. BurnA

    BurnA Senior Member

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    Thanks for the update @Freddy - its always nice to get up to the minute information on research.

    One query I have, just in case you might know, do all the patients have elevated levels of the antibodies you mention ? I ask because I imagine it would be useful if they had patients who didn't have these elevated autoantibodies and could demonstrate a lack of response or not ?
     
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  11. Sasha

    Sasha Fine, thank you

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    @Jonathan Edwards has raised concerns before about patient responses to ongoing trials being posted online in case it undermines the research (a thread was taken down some months ago because of the risk it posed to the research).

    I understand the post is very well meant, @Freddy, and we're all interested but I'm a bit concerned! I wonder if you'd mind editing out the bits where you say how you and the other patients have been doing, unless/until Prof. Edwards can advise it's OK?
     
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  12. BurnA

    BurnA Senior Member

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    I think that was in relation to the phase 3 RTX blinded trial in Norway.

    Unless this is a blinded trial ( impossible in plasmapheresis ?) I doubt the concerns are the same but I am certainly no expert.
     
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  13. Sasha

    Sasha Fine, thank you

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    I'm no expert either but I am a bit of a worrier!
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    I was wondering this as well and suspect there are probably a variety of auto-antibodies that could be elevated although most people outside of Germany/research have not had access to the antibody panel that Freddy has had done (please correct me if I am wrong.) I suspect I would be positive for the ß adrenergic and muscarinic cholinergic receptor antibodies if I had access to that particular test based on being positive for anti calcium channel antibodies.
     
  15. Freddy

    Freddy

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    try to keep track of the question...

    First of all, tx for caring about the issue of sharing information publicly. I had the same worries but asked them directly. Few month ago they told me not to share but now I've got a positve answer.

    I dont know right now which specific autoantibodies I was positive but I will ask them at my next appointment

    I'm not aware of another study in plasmapheresis. The group at the Charite is literally overrun by patients. There are not many alternatives for treatment of CFS in Germany. The study is prety expensive. In different autoimmune conditions plasmaphersis seems to be only applied as ultima ratio.

    They are very well aware that the IgG substitution itself can contribute to symptom relief, i think they try this seperately with patients with IgG subclass deficiency.

    Do all patients have these elevated autoantibodies: no, according to the paper its approximately 30% of us.

    I cant assess the influence of the treatment on PEM yet, I apply very strictly pacing, so no PEM event in the last 2 month after plasmapheresis.

    @MeSci : I've CFS now for 15 years. I am pretty susceptible to respiratory infections (4 times a year) and this is always a possible tricker for relapse.
     
    Last edited: May 1, 2016
  16. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Allright! Is the IgG-substitution intravenous or intramuscular? Would you be so kind and check with them if they are conducting a study? I ask this because we are trying to get something going in Norway at the moment.

    Regarding the PEM - that makes sense of course.
     
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  17. Freddy

    Freddy

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    Cool! wish you success!
    The final IgG-sub in my case was intravenous. Within the IgG-sub. study I guess it is intrmuscular.
    One more question for my next appointment...
     
    Last edited: May 2, 2016
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  18. Freddy

    Freddy

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    No I got your question ....

    As far as I know, all participants in the study do have these autoantibodies (compared to 30% of all patients).
     
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  19. Gingergrrl

    Gingergrrl Senior Member

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    Hi Freddy,

    Thank you so much for responding to my PM (which I will answer soon) but want to respond here, too.

    Neither am I and it does not seem to exist.

    I figured! I think the Charite is really onto something big (at least for the illness or subgroup that I am in) and I wish I had some way to be in this study!

    I am still unclear if I have "CFS" or an atypical form of it vs. a neuromuscular issue from the auto-antibodies which causes POTS, autonomic and other problems. It has tremendous overlap with CFS but also many differences.

    ETA: I forgot to add that while there are different treatments and alternatives for CFS in the US, there is absolutely nothing involving plasmapheresis that I am aware of which is a bummer. And not just as a research study but as a treatment option, period.

    This is what I am learning in the US, that plasmapheresis for autoimmune conditions is literally not done. It was recommended to me including frequency and details and then completely retracted. It seems to be extremely uncommon here outside of oncology.

    I have one more question for you and putting in here in case it helps anyone else:

    In Germany in your study, it sounds like the version of plasmapheresis that they did was to separate the plasma, clean it of the antibodies, and then put your own plasma back into your body. Is this correct? (Everything I am finding in the US involves removing the plasma, discarding it, and replacing with donor plasma or a solution of albumin, saline or other materials.) Can you confirm how it was done in Germany?
     
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  20. Sushi

    Sushi Senior Member Albuquerque

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    As I remember, Vanderbilt does some of this testing.
     

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