Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

Anyway just a minor update from me. It is almost 7 weeks exactly have passed since dose 1 and I followed the protocol, with no side effects or adverse reactions, not falling sick.

Since my last test right after the 3rd dose, my IGG has halved and NKs have been wiped out.

Still feel tired, no major changes, no change in fatigue, but I feel some improvement in brainfog/cognition - however idk if it is placebo or not.

My fatigue is still bad and I wake up feeling like I slept 0 hours still.

Side note- in the study, I wonder if their sampling times like week 2,4,6,8 refer to the end of the week (aka the week has completed) or the start.

Again, I am still unsure if it is placebo or not. Unless it’s major change, then I can tell.
 
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I’m not well enough to digest all of this thread, and I don’t have the capacity or expertise to understand all of the science.

Can someone summarise in not too technical language what it would tell us about the pathology and mechanism of ME/CFS if daratumumab was shown to be an effective treatment for at least some people with ME/CFS.

For example, would it tell us that ME/CFS is B cell mediated in the subgroup of responders?

Would it tell us that were was something in the blood that, if identified, could be used for prognostic and differential diagnostic purposes?

Would it tell us whether ME/CFS (in responders) is an auto-immune disease?

What else?

I guess that in some cases it may just narrow down to possibilities of what the mechanism of ME/CFS might be in responders but I would be interested to try to understand what those possibilities would be.
 
Robert 1973 said:
Can someone summarise in not too technical language what it would tell us about the pathology and mechanism of ME/CFS if daratumumab was shown to be an effective treatment for at least some people with ME/CFS.
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Probably not @Robert 1973. There are a whole range of possible ramifications f a positive result. But in very simple terms it might mean B cells and antibodies are involved (maybe in some way we are not familiar with yet) and it might alternatively mean that activation of a whole range of immune cells, inluding NK cells, t cells and macrophages is involved, through a particular signal pathway.

But if the drug is effective it should not take too long to find out which.
 
EndME said:
I think for one the other CD19 and CD38 drug trials could then be informative on what differences, if any, might be driving responses.
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Yeah I remember isa maybe being better at depleting cd38 than dara or something? I can't remember, no spoons to look it up but I saved it somewhere.

It would be a real turn up for the books if cd19 works.

I'm glad CS seems to be moving swiftly with those trials.
 
Jonathan Edwards said:
There are a whole range of possible ramifications f a positive result. But in very simple terms it might mean B cells and antibodies are involved (maybe in some way we are not familiar with yet) and it might alternatively mean that activation of a whole range of immune cells, inluding NK cells, t cells and macrophages is involved, through a particular signal pathway.
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I know I’m getting ahead of myself here but do you think it is likely that whatever novel mechanism is revealed is likely to further our understanding of other diseases, and therefore our ability to treat them?
 
Robert 1973 said:
I know I’m getting ahead of myself here but do you think it is likely that whatever novel mechanism is revealed is likely to further our understanding of other diseases, and therefore our ability to treat them?
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Very likely, even if the other diseases are a bit esoteric.
I have a feeling that if we can understand ME/CFS we may have a better understanding of all sort of diseases though.
 
Jonathan Edwards said:
Very likely, even if the other diseases are a bit esoteric.
I have a feeling that if we can understand ME/CFS we may have a better understanding of all sort of diseases though.
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Are there any particular types of disease that you think that understanding ME/CFS might help with?
 
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