Long-lived plasma cell (LLPC) theory - Similarities between CFS and Lupus?

It's hard to draw everything together without ending up with a huge post. I think the arguments are there in the thread - and in the Qeios paper, which has a thread.

It might be antibody related, but I think other possibilities deserve serious thought.
 
Might be off topic but I have managed to get my NK cells from 49/μL (2nd Aug) to 92/μl (2nd Sep) with a protocol of blueberries, zinc, vit D/C/E, high dose melatonin. I hope it keeps going up.

Next test on 17th Sep Wed. Results take 2W.
 
Might be off topic but I have managed to get my NK cells from 49/μL (2nd Aug) to 92/μl (2nd Sep) with a protocol of blueberries, zinc, vit D/C/E, high dose melatonin. I hope it keeps going up.

Next test on 17th Sep Wed. Results take 2W.
May I ask the reasoning behind this? I assume that this is related to dara (please correct me if I am wrong) - is your thinking that the difference between responders and non-responders lies in the NK cells themselves, rather than in some upstream process, so you want to get your NK cells as high as possible? Or is there some other reason for wanting high NK cells?

I had never paid much attention to my own NK cells until recently; looked at last test results and noted that I am at 283/μL Ab NK (CD56/16) and 21.8% NK cells (interestingly, t-cells are apparently slightly low?).
 
May I ask the reasoning behind this? I assume that this is related to dara (please correct me if I am wrong) - is your thinking that the difference between responders and non-responders lies in the NK cells themselves, rather than in some upstream process, so you want to get your NK cells as high as possible? Or is there some other reason for wanting high NK cells?

I had never paid much attention to my own NK cells until recently; looked at last test results and noted that I am at 283/μL Ab NK (CD56/16) and 21.8% NK cells (interestingly, t-cells are apparently slightly low?).

Well yes if NK cells are the predictor of response because of ADCC mediated CD38 cell killing then my logic is to boost NK cells as high as possible, then take Dara.

283 is pretty good.

From limited anecdotes it seems severity is not correlated to NK cell count (we saw this in the study already), I am an example, mine is 50 (super low) but I would classify as mild.

Also wondering if it really is low NK cells being a non responder subset... if you can boost them up.... are you still in the subset or not?
 
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@Jonathan Edwards could you think of a reason why for CD38 binding, the response would take 2 months?

Would a feedback loop be pretty quick?

The scores for SF36 all started going up in tandem around the 6W mark (3rd dose) in responders. So if it was AABs, then it could be like the supply was cut off, but the remaining AABs in the blood still circulate. Given a 3W half life at 6W they would be 75% consumed/finished.

I think it is interesting to note the SF36 scores were not linear in time, they were flat until the 6W mark.

So to me, it would be like gas/fuel in a pipe feeding a power plant. The supply is cutoff and the remaining fuel is pumped into the power plant. At the 6W mark, almost all the fuel is consumed and the plant shuts down.
 
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@Jonathan Edwards could you think of a reason why for CD38 binding, the response would take 2 months?

It's a very interesting question.

I have no idea how long it would take to quieten down T cells by blocking CD38. My guess would be a week or two but I think it could be longer. There might be artefactual aspects to when people say they are better. If they are pacing it might take them a week or two to be sure they are really able to do more with impunity. There might be expectations that more than one dose was needed to produce an effect.

But antibody attrition does present a possible explanation. It is a bit quick for that but maybe these are antibodies with short life spans.
 
Definitely something that the response was not linear in time but piece-wise after 6 weeks.

If the patients were not in communication with one another (e.g all together in a whatsapp group updating each other) then it would be quite a coincidence indeed.
 
If the patients were not in communication with one another (e.g all together in a whatsapp group updating each other) then it would be quite a coincidence indeed.
I think this is quite a worry with many of trials currently happening in this sphere because it is often that case that a majority of participants are indeed communicating with each other. That cannot be neglected (some of the decentralised trials have essentially even been recruiting patients from specific social media channels where they communicate with each other). Unfortunately, we've even seen researchers sharing results of unblinded trials on social media whilst they are still ongoing.

I'm not a fan of NDA clauses but I think social media has changed that in the context of ongoing trials. Even for double blinded randomised placebo-controlled trials there are non-negligible risks (I've seen patients that are sharing extremely detailed accounts whilst the trial is ongoing often including specific side effects, results of objective measurements, how they made it into the trial etc). I think this is something that has to thought about.

We've seen some people faking medical information to be part of trials or abort them as soon as they don't get the same reaction as their friends in the trial. If the sample sizes are large enough and there's a placebo that offers a perfect control the risks seem fairly low but quite often that is not the case.

I do have the feeling that things with Fluge/Mella are generally better, especially since they are not "influencer scientists", but then again I'm also not part of any Norwegian communities.
 
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I do have the feeling that things with Fluge/Mella are generally better, especially since they are not "influencer scientists", but then again I'm also not part of any Norwegian communities.
I’m part of some of the larger groups, and I’ve not seen anything from the patients before the results were made public. But I might have missed some.
 
I think this is quite a worry with many of trials currently happening in this sphere because it is often that case that a majority of participants are indeed communicating with each other. That cannot be neglected (some of the decentralised trials have essentially even been recruiting patients from specific social media channels where they communicate with each other). Unfortunately, we've even seen researchers sharing results of unblinded trials on social media whilst they are still ongoing.

I'm not a fan of NDA clauses but I think social media has changed that in the context of ongoing trials. Even for double blinded randomised placebo-controlled trials there are non-negligible risks (I've seen patients that are sharing extremely detailed accounts whilst the trial is ongoing often including specific side effects, results of objective measurements, how they made it into the trial etc). I think this is something that has to thought about.

We've seen some people faking medical information to be part of trials or abort them as soon as they don't get the same reaction as their friends in the trial. If the sample sizes are large enough and there's a placebo that offers a perfect control the risks seem fairly low but quite often that is not the case.

I do have the feeling that things with Fluge/Mella are generally better, especially since they are not "influencer scientists", but then again I'm also not part of any Norwegian communities.

Well im quite sure they didnt communicate with each other because the woman in the IG video has no idea who the other participants are.
 
Well im quite sure they didnt communicate with each other because the woman in the IG video has no idea who the other participants are.
Yes, I think it's plausible that its a non-issue for the Fluge and Mella trial (even if one person not knowing other participants doesn't rule out other communications between participants), my comments were supposed to be more general than that but probably not quite fitting to this thread.
 
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