https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5854315/
This might have already been posted a while back...
This might have already been posted a while back...
Last edited:
All CFS patients showed improvement with Immunoadsorption (small study)
- Thread starter Belbyr
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I don't think this is being done in North America; there is apparently one doctor on the west coast who has an old machine for plasmaphoresis, but this is not the same thing. Am I incorrect with my information? Can this be done in NA
Gingergrrl
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Plasmapheresis or "PLEX" is done in North America vs. immunoadsorption (in the study posted above) is more common in Europe and Asia.
Yes, I understand PLEX is done, but I know of only one doctor, and he apparently uses a rather older German machine--or so I was told by another doctor.
Secondly, immunoadsorption is not at all the same process.
Now if Scheibenbogen got good results, would that not point to the fact that there is something in the blood which is best removed or filtered out.
At any rate, this is all too slow for the very sick who can't get through the next minute let alone the years it takes for science. But S's patients are lucky, if they are better. But we here in North America are left with not too much at all.....
JES
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From my layman's understanding, immunoadsorption is a safer and more specific form of plasmapheresis, which would be able to remove the specific problematic autoantibodies. It would also provide an advantage over IVIG, which comes with more side effects and doesn't necessarily get rid of the autoantibodies. Sounds like a pretty promising treatment for ME/CFS, but unfortunately not available widely...
Gingergrrl
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There are definitely clinics and hospitals who perform plasmapheresis/ PLEX in the US but I do not know about Canada. It was considered for me in 2016 but b/c of the specifics of my case (including uncontrolled anaphylaxis at that time and other factors), my doctors did not feel it was safe for me and I started with high dose IVIG instead.
You are 100% correct and it is a different process. Both PLEX and IA achieve the same purpose but PLEX replaces what is removed with donor plasma or albumin, etc, vs. IA cleans/filters what is removed and then puts it back into the body.
That was my interpretation as well. I assumed it was an autoantibody but I guess it could also be something else.
Do we know if Dr. S's patients remained improved long-term after the study was over? PLEX and IA often deliver very fast improvement (which can be diagnostic for autoimmunity) but then the improvement is short-lived without a longer term treatment like IVIG and/or Rituximab.
IVIG can definitely have more side effects but there are lots of things that can be done to reduce the chance of side effects like having the proper pre-meds, doing a very slow infusion speed, splitting the infusion over 2-3 days, etc. But you are correct that IVIG is not a cure and it does not stop B-cells from creating new autoantibodies at the production level like Rituximab does.
I am hoping that more will be published about the long-term results of this study in the future. And I am so sorry @perrier about the long-term suffering of your family member and continue to hope that she will get treatment that brings significant improvement (and hope this for every one).
dreampop
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Are there any members of the forum that tried IA or plex? I believe a former member @Jesse2233 did and seemed to recover shortly after trying this, although he tried a lot of things including hbot. Are there any others (who tried it for me/cfs specifically)?
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Here is another call out on an older thread; Anyone tried Immunoadsorption (IA)?
Link to recent study below. August 2020
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Efficacy of Repeat Immunoadsorption
"Moreover, an improvement in clinical symptoms could be achieved in seven of the patients, which lasted, in three patients, for more than 12 months [23]. Furthermore, the ME/CFS patients frequently suffer from endothelial dysfunction, which was also improved following IA [26]. "
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7465279/
Link to recent study below. August 2020
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Efficacy of Repeat Immunoadsorption
"Moreover, an improvement in clinical symptoms could be achieved in seven of the patients, which lasted, in three patients, for more than 12 months [23]. Furthermore, the ME/CFS patients frequently suffer from endothelial dysfunction, which was also improved following IA [26]. "
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7465279/
Pyrrhus
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Existing discussion:
Immunoadsorption to remove ß2 adrenergic receptor antibodies in CFS/ME.
https://forums.phoenixrising.me/thr...renergic-receptor-antibodies-in-cfs-me.58277/