Carmen Scheibenbogen research update with SolveMe

[Consul]

 

[keepontruckin]

They seem to be making big strides forward in their research. I really appreciate her update.

 

[Consul]

True. Lots of nice info in this one. So Abilify has effects against autoimmunity, she mentioned this in the vid, probably a surprise to most ppl.

 

[Rufous McKinney]

bump

 

[Murph]

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...

 

[Insomniac]

I had to watch circa 28.00 twice, because it is hard for me to concentrate and understand things. I recommend everyone skip to that part in the video. I didn't realise that Germany had that much research or that this researcher was so good. She is light years ahead of Klimas in my opinion.

 

[Belbyr]

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.

 

[keepontruckin]

If this continues to work it could be a game changer. Germany is planning to try it on rheumatoid arthritis and MS.
https://www.pharmavoice.com/news/exciting-study-potential-car-t-cancer-lupus-Teodora-Staeva/634742/
I hope Governments invest in this.

 

[MonkeyMan]

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.

 

[keepontruckin]

Monkeyman, I think if it was working reasonably well there would be a stampede of people to Germany.

 

[mitoMAN]

Monkeyman, I think if it was working reasonably well there would be a stampede of people to Germany.

Results for ME/CFS are disappointing but mich more attractive for very early treated LC
(I had IA as well as few friends)