Hope for an ME/CFS Autoimmune Subset: A German Researcher Steps Forward

Gingergrrl

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@pibee Do you view your ME/CFS as an autoimmune disease vs. that it is not autoimmune and you have two completely separate distinct illnesses?

There is no right or wrong answer to this question and I am just trying to sort this out in my mind.
 

pibee

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I have no idea what to think anymore :) Just that obviously is not as simple as B cells autoimmunity. Maybe that's just part of the picture in 1 subgroup. :-/
I haven't yet talked to anyone who had classical ME, PEM and recovered with Rituixmab.
Dr Maria Gjerpe seems to be that case but there is language barrier and I read only short story from Google translate, about her pre-ritux and current condition.
 

Gingergrrl

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@pibee, I have no idea how this pertains to the Cell Trend Abs but when I tested positive to the Calcium Channel Auto-Ab, the Neuros told me that the level of the titer did not correlate with the level of symptoms.

The number should be zero but you could be a low, moderate or high positive. The Neuros said that a low positive could have extreme symptoms and a high positive could have zero symptoms so I wonder how this compares to the Abs that Dr. Scheibenbogen was testing?

Also, do you know if Dr. Maria Gjerpe was positive for any autoantibodies prior to her improvement from Ritux?
 

pibee

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I dont know about Gjerpe, if CellTrend was even available then. Wish we know. She is on FB, maybe ask her?
I contacted her but she didnt respond, prob gets too many msgs.

----- I saw now that there are detailed data for all patients available for Scheibenbogen's study, I didnt see it, that's great, will read it all..
 

Gingergrrl

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I dont know about Gjerpe, if CellTrend was even available then.
I realized that I do not know Dr. Gjerpe's story either but it sounds like she made a full recovery from Rituximab? I am guessing that it was years before Cell Trend even existed. I am going to Google her b/c I am curious what her exact symptoms were and if they tested her for any autoantibodies. Do you know if she had POTS or autonomic problems?

----- I saw now that there are detailed data for all patients available for Scheibenbogen's study, I didnt see it, that's great, will read it all..
Please let me know what you learn. I am very interested to learn about responders of the Rituximab study and Dr. Scheibenbogen's study (even if there were only a handful of people and even if they ultimately relapsed). The common factor must be B-cell driven auto-antibodies. I do not know any statistics or which studies were robust vs. poor BUT I am more interested in the overall concept/mechanism and feel there is a lot to learn here that may apply to many autoimmune mediated diseases.
 

kurt

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I am surprised this study is not getting more attention, I think this could be a major breakthrough!

This is a new topic for me, so not much to say, I'm studying now to learn about autoimmunity. And have been interested to learn that researchers now consider autoimmune conditions to be a spectrum of illnesses, over 100 known autoimmune diseases, and counting. And there are many that share symptoms with ME/CFS. Also 3/4 of autoimmune patients are women. This leads me to wonder whether ME/CFS is simply a collection of unknown autoimmune diseases, and Scheibenbogen has found the first disease in that collection.

I was surprised to see Chronic Lyme Disease on the list at aarda.org, which I think brings up the idea of post-infection syndromes being partly or even primarily autoimmune in nature. This research thread will be interesting to follow.
 
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Gingergrrl

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I am surprised this study is not getting more attention, I think this could be a major breakthrough!
I totally agree and I have seen a lot of people quickly dismiss this study which was shocking to me. I don't get that at all and think it is a great preliminary study with lots of leads to follow-up on.

And have been interested to learn that researchers now consider autoimmune conditions to be a spectrum of illnesses, over 100 known autoimmune diseases, and counting.
Thank you for that link @kurt and I have bookmarked it for later.

This leads me to wonder whether ME/CFS is simply a collection of unknown autoimmune diseases, and Scheibenbogen has found the first disease in that collection.
My own feeling is that ME/CFS will be a collection of either sub-sets, or different diseases, but not that they will all be autoimmune mediated. I think some will be autoimmune but others will be immune-deficient. But I feel that the immune system is the key (this is just my opinion of course).
 

crypt0cu1t

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@pibee, what are your thoughts on the research? To me, it seems like if IA or plasmapheresis (PP) immediately helps someone (even if they relapse), that we identified an autoimmune cause. Whether this is a sub-set of ME/CFS or another mis-diagnosed autoimmune disease remains to be seen IMO but I think this preliminary work is really interesting and important.

You are like me with a whole bunch of autoantibodies (although not exactly the same ones) but we overlap re: the Cell Trend and thyroid autoantibodies. Our symptoms are different, though, too, and I have never had hypertension (only hypotension) and we've talked about the other stuff before.

But overall, I am glad that one of the researchers is focusing on autoimmunity and am impressed with her work thus far. I hope she is able to get more funding for future studies.
Excuse my ignorance, but what is IA? I'm always looking for alternative treatments!

Also, how would I know if my autoimmunity is B cell or T cell mediated?
 

Learner1

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I believe it's immunoadsorption, which is a blood-purification technique that enables the selective removal of immunoglobulins from separated plasma through high-affinity adsorbers. It is currently used for treatment of a large variety of antibody-mediated or immunological diseases (e.g., humoral transplant rejection, lupus nephritis, and multiple sclerosis).
 

crypt0cu1t

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I believe it's immunoadsorption, which is a blood-purification technique that enables the selective removal of immunoglobulins from separated plasma through high-affinity adsorbers. It is currently used for treatment of a large variety of antibody-mediated or immunological diseases (e.g., humoral transplant rejection, lupus nephritis, and multiple sclerosis).
You're a rockstar! Thanks for the help lol
 

Gingergrrl

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Excuse my ignorance, but what is IA? I'm always looking for alternative treatments!
I believe it's immunoadsorption, which is a blood-purification technique that enables the selective removal of immunoglobulins from separated plasma through high-affinity adsorbers. It is currently used for treatment of a large variety of antibody-mediated or immunological diseases (e.g., humoral transplant rejection, lupus nephritis, and multiple sclerosis).
Learner's answer blows mine out of the water LOL. IA is "immunoadsorption" which is similar to plasmapheresis but done in the UK/Asia vs. the US. IA removes the plasma, filters it, and puts it back in the body vs. PP replaces it with donor blood or albumin, etc.

Also, how would I know if my autoimmunity is B cell or T cell mediated?
I'm going to defer to Learner's future answer but my limited understanding was that autoantibodies are created by B cells (so if you have autoimmunity it is B-cell driven) but maybe this is incorrect. I know bits and pieces but rarely ever understand the full picture :bang-head:
 

crypt0cu1t

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Learner's answer blows mine out of the water LOL. IA is "immunoadsorption" which is similar to plasmapheresis but done in the UK/Asia vs. the US. IA removes the plasma, filters it, and puts it back in the body vs. PP replaces it with donor blood or albumin, etc.



I'm going to defer to Learner's future answer but my limited understanding was that autoantibodies are created by B cells (so if you have autoimmunity it is B-cell driven) but maybe this is incorrect. I know bits and pieces but rarely ever understand the full picture :bang-head:
Learner's answer blows mine out of the water LOL. IA is "immunoadsorption" which is similar to plasmapheresis but done in the UK/Asia vs. the US. IA removes the plasma, filters it, and puts it back in the body vs. PP replaces it with donor blood or albumin, etc.



I'm going to defer to Learner's future answer but my limited understanding was that autoantibodies are created by B cells (so if you have autoimmunity it is B-cell driven) but maybe this is incorrect. I know bits and pieces but rarely ever understand the full picture :bang-head:
Thanks Ginger, that was my understanding as well, but I always second guess myself because I cant remember hardly anything anymore lol
 

Gingergrrl

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This is a little lengthy, but this doctor explains the immune system and autoimmunity quite well:
I bookmarked this and am curious to watch this video later when I have time.

Thanks Ginger, that was my understanding as well, but I always second guess myself because I cant remember hardly anything anymore lol
Thx but I would still ask your doctor (re: B cell and T cells) in case I am wrong!