Donations for a trial using BC 007 specifically for me/cfs

[Alvin2]

They've reached 146 000 Euros now! You can follow the project here:

Twitter:
https://twitter.com/MECfsFundraiser

Info page in English with (donation progress bar at bottom):
https://wir-fordern-forschung.org/en/

This is going to sound mean but if David Tuller got this kind of money he would be working for us full time.

 

[mitoMAN]

This is going to sound mean but if David Tuller got this kind of money he would be working for us full time.

Should start a separate fundraiser for that?

 

[Alvin2]

Should start a separate fundraiser for that?

It already happens twice a year.

I am dismayed that people would donate so much money for a very highly overpriced pie in the sky idea thats little better than buying lottery tickets instead of reporting that would help decimate the psychosomatic claptrap and could lead to real ME/CFS research funding.

 

[Consul]

BC007 takes out certains specific autoantibodies (the immune system attacking receptors in the body).

The whole point of BC007 is to take out these antibodies without affecting other antibodies.

That means, if Rituximab didn't work, BC007 can't possibly work. But if it does, it doesn't wipe out the rest of the immune system, like Rituximab does.

There is little point in raising 800 000 USD for this trial, as the major hurdle is selecting patients, not removing the antibodies, which can simply be done with Rituximab or even cheap steroids. Why don't we use steroids for
[...]

I dont think rituximab wipes out the immune system. Antibodies are produced by plasma cells and plasmablasts, rituximab can only wipe out some of the latter ones since they still express some cd20. Plasma cells can live for years+ so if this is the source of the autoantibodies you cant touch them with rituximab.

 

[Sizzle]

 

[Husband of]

I think it only targets certain antibodies, namely the GPCR autoantibodies, specifically the beta-1 adrenergic and the alpha-1 adrenergic receptor. Here is a quote on this from another thread:

https://forums.phoenixrising.me/thr...ases-applicable-to-me-cfs.84695/#post-2352589


My question is, it seems that only a subset of ME/CFS patients are positive for these autoantibodies (https://pubmed.ncbi.nlm.nih.gov/26399744/), does this mean this medication would only be helpful for those individuals?

Can one test for these antibodies?

 

[Shanti1]

Can one test for these antibodies?

Yes, CellTrend in Germany tests for them: https://www.celltrend.de/en/pots-cfs-me-sfn/important-publications/

I'm not sure where you are in the world, but I had my blood sent 2nd day via fed-ex from the US to have the testing done. The POTS/Long-COVID is the panel you would want. I also did the SFN panel. I did not have any antibodies show up as positive, but many people do.

There is debate on how closely the antibodies correlate with with ME/CFS and POTs as some percentage of healthy individuals has them as well. This thread has a nice discussion:
https://forums.phoenixrising.me/threads/relevance-of-celltrend-results-for-treatment.87644/

Nonetheless, I think it is helpful when trying to figure out if someone may be a candidate for BC007 and other antibody depleting/modulating therapies such as immunoadsorption, IV IgG, or B-cell depletion.