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Carmen Scheibenbogen research update with SolveMe

Murph

:)
Messages
1,799
I've been doing a lot of reading recently on vascular issues in me/cfs and the more I read the more I think Scheibenbogen is probably the leading researcher in me/cfs at the moment.

Like Ron she's 100% committed, like Klimas she's extremely productive, like Marshall Gradisnik she puts out a lot of papers, but what places her above those 3, she's actually deep into something that I suspect is at the core of things for an important subset of patients. (and what biases me is I reckon I'm in that subset! my issues have always seemed to have something to do with bloodflow).

She keeps replicating her findings; she has done treatment trials that work (plasmapheresis and immunoadsorption) and she has won a lot of national funding to explore the issue further.

I think this is the main paper she's discussing in the video.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9426365/

It seems to show post-covid me/cfs and old-school me/cfs are similar. symptom severity correlates with the level of autoantibodies against alpha and beta receptors.

The fact everyone has these autoantibodies is so weird. We've always seen autoimmunity as an abberation but apparently it is normal and can be controlled homestatically by the body usually. The issue is that in me/cfs it is not under control...
 
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MonkeyMan

Senior Member
Messages
405
After having done 3 months of IVIG and feeling slightly better, maybe a 10% improvement. I would love to see how plasma exchange/pheresis would do. Or, just straight up B cell reduction.

Me too. Has anyone on this board tried plasma exchange/pheresis for their ME/CFS? I believe it's available in Germany for those willing to travel there.