Oh wow that's ridiculous. Well my 3k quote came from my trusty Indiamart vendor whom I buy my antivirals and other drugs from.
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The bone marrow NK-cell profile predicts MRD negativity in patients with multiple myeloma treated with daratumumab-based therapy, Korst et al. 2025
- Thread starter Jaybee00
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Watch the video of Oystein presenting at International ME CFS Conference 2025 -
ADCC is the mechanism by which NK cells attack the CD38 LLPCs which are theorized to produce the AABs.
This is very encouraging. Maybe a pre-treatment is to jack up the NK cell counts as high as possible, either with transfers or supplements or herbs or whatever. Then hit it with the Dara
Thanks, but sadly these issues have been very resistant.
I might not have PEM because my baseline is high enough that walking or stairs doesn't trigger it. I've been trying many things but I am probably going to try Dara with my immunologist as I think the response rate and score is very good.
But I first did an NK cell test to check my counts. My plan is to also boost it with some supplements and other stuff.
I like that this matches with the study findings, a lower baseline NK cell count = non responder. Probably the NK cells were too fried to do anything.
From googling it says Iberdromide increases CD38 expression by 60% on MM cells. But is it specific to MM cells or could it work on LLPCs?
Also intuitively, I think the NK cell count and function matter more as CD38 is just the signalling flag saying 'kill me', the NK cell is the one doing the killing. Could be a lot of flagging but no one to do the cell killing.
So if you guys could help brainstorm ways to boost NK cells and function that would be nice.
ChatGPT says
Blueberries
Vit D
Zinc
AHCC
Astralagus
Ginseng
Beta Glucans
Utsikt
Senior Member (Voting Rights)
We actually don’t know what the response rates are because we have not have any placebo controlled trials. We saw substantial responses to saline in the ritux trials, so it’s far too soon to say if anything actually happens with Dara.
Was the response rate in responders from like SF36 20 to like 70? Some of the responders went from that. That's like back to being a healthy person. I find it hard to believe saline can do that.
Do you have the paper link? There are quite a few ritux papers by Fluge & Mella and I don't know which one is the one.
The mean step count went from 3.2k to 4k in the treatment and placebo group im looking at:
B-Lymphocyte Depletion in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome A Randomized, Double-Blind, Placebo-Controlled Trial.
I had a look at SF36, i think that is quite easy to fool with placebo as you can just tick you feel better. But step count would be more accurate as it doesn't lie.
You had like 2000 steps to 9000 steps by end of treatment in responders.
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Utsikt
Senior Member (Voting Rights)
If you don’t have a blinded placebo controlled group you have no idea how the results might be affected by things other than the intervention. Getting an injection with something you believe might help you is just a minor part of that.
We all want there to exist something that works and that we can try today. That desire might cloud our judgement, and get us to try all kinds of expensive and potentially fatal interventions. That’s why we do proper trials first.
But you should also look at the earlier trials.
Well I can see the placebo impact from mean step count in placebo from 3233 to 3904 whereas ritux treatment went from 3297 to 3777. I'm making the case the effect size here is crazy in this dara study.
But to be honest, there is a diagram in Olav Mella's study that shows them going up the 'ladder' of B cell lineage, where ritux targets the start, cyclo targets the mid and dara targets the end. So after this I don't know what else they have in m ind.
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Utsikt
Senior Member (Voting Rights)
It’s still a small, unblinded single arm study. A large effect size doesn’t change the substantial inherent uncertainty with that design.
You also have to look at the individual participants in the ritux studies to get a picture of how much variation there might be in the individual trajectories.
I’m not trying to argue that we know that Dara doesn’t work. I’m saying that we don’t know if it works, and it’s a very dangerous (and expensive) drug.
Fair, but sadly the paper does not show the individual data.
Also, to add on some anecdotal evidence, not sure if you've seen this, but Dr Leo Habets in Aachen says he has treated 5 patients with a full cycle of Dara (presumably according to the study dose) and 4 have improvement.
This was in Feb and he hasnt said much since though
This is tweet:
Utsikt
Senior Member (Voting Rights)
Habets says a lot of things about a lot of interventions. That data is close to meaningless due to the many flaws mentioned above, and even more when it isn’t even done in the setting of a trial.
We’re getting very off topic for this thread. There are other threads for discussing Dara as a potential treatment for ME/CFS.