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

Jonathan Edwards said:
Our original 1999 Immunology paper (Edwrds, Cambridge, Abrahams) on self-perpetuating autoreactive B cells had diagrams to show how this all works. I am not sure if it is open access now.
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This?

Do self-perpetuating B lymphocytes drive human autoimmune disease? - PMC

Normal immunological memory is thought to be underpinned by T lymphocytes. However, in rheumatoid arthritis there are indications that T-lymphocyte control has been subverted by self-perpetuating B lymphocytes. Potential mechanisms in other ...
pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov
 
Well, that’s were we differ in beliefs :) tell that to the ladies with enough NK cells that experienced remission on Dara or Cyclo

Congrats on your remission! Becuase the trial was small and unblinded, it’s not the drug, it’s just your placebo. Since there is no real effect, congrats on quadrupling your step count and going back to exercise with the power of your mind!

Throwing evidence away is just lazy imo.
 
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ryanc97 said:
Well, that’s were we differ in beliefs :) tell that to the ladies with enough NK cells that experienced remission on Dara.

Congrats on your remission! Becuase the trial was small and unblinded, it’s not the drug, it’s just your placebo. Congrats on quadrupling your step count and going back to exercise with the power of your mind!

Throwing evidence away is just lazy imo.
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It doesn’t have to be the power of the mind. ME fluctuates naturally.
 
Verity said:
It doesn’t have to be the power of the mind. ME fluctuates naturally.
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Congrats on achieving a fluctuation that quadrupled your step count and let you exercise despite being housebound for the last 5 years! What a fluctuation!

Just so happened this fluctuation was after your fourth dose of Daratumumab!
 
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ryanc97 said:
Congrats on achieving a fluctuation that quadrupled your step count and let you exercise despite being housebound for the last 5 years! What a fluctuation!
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This sort of thing does actually happen. Some people have reported randomly going into remission. We can’t rule it out.

I’m not saying it definitely happened—just that we can’t possibly know without a controlled trial.
 
Verity said:
This sort of thing does actually happen. Some people have reported randomly going into remission. We can’t rule it out.

I’m not saying it definitely happened—just that we can’t possibly know without a controlled trial.
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For sure, half of them all going into remission at the same time all happened to have higher NK cells!

Where is the evidence for such large scale fluctuations? Is there observational studies? Or is it an anecdote. Aka the same level as treatment anecdotes.
 
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ryanc97 said:
For sure, half of them all going into remission at the same time all happened to have higher NK cells!

Where is the evidence for such large scale fluctuations? Is there observational studies? Or is it an anecdote. Aka the same level as treatment anecdotes.
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No one has any idea how much ME fluctuates. Additionally, all kinda of things affect how humans behave and what they report. It’s complex.

Dara may well work, but we can’t say so from the data we have. The number of patients in the study was so small that it could just be chance that they got a larger-than-average number of improving patients.
 
Verity said:
No one has any idea how much ME fluctuates. Additionally, all kinda of things affect how humans behave and what they report. It’s complex.

Dara may well work, but we can’t say so from the data we have. The number of patients in the study was so small that it could just be chance that they got a larger-than-average number of improving patients.
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Are you not implying that treatment anecdotes are invalid but random fluctuation anecdotes are valid?

Here’s some probability teaser: given 10 randomly sampled mod-severe ME female patients from Bergen, what is the probability half of them experience large improvements all around the same time just by chance?
 
ryanc97 said:
So you are saying that treatment anecdotes are invalid but random fluctuation anecdotes are valid?
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Anecdotes of random fluctuation are enormously more numerous than anecdotes of success with daratumumab.

I focused on the possibility of fluctuation because you seem unwilling to consider the idea that a genuine placebo affect could occur, but that is a real option too.
 
ryanc97 said:
Well, that’s were we differ in beliefs :) tell that to the ladies with enough NK cells that experienced remission on Dara or Cyclo

Congrats on your remission! Becuase the trial was small and unblinded, it’s not the drug, it’s just your placebo. Since there is no real effect, congrats on quadrupling your step count and going back to exercise with the power of your mind!

Throwing evidence away is just lazy imo.
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Ryan, those data points are not evidence of efficacy when you view it in context of the cyclo data.

For dara it’s too soon to tell because of the lack of controls.

There appears to be a fundamental misunderstanding of what a given piece of data can tell us about causality.
 
That’s fair. Maybe I am biased because in my onset since the start of this year I have not experienced any symptom fluctuation except naturally improving every night and feeling better at night.

I can tell what works like stimulants like Modafinil and Caffeine and Nicotine but the effects are only for hours.

My fatigue has remained the same since day 1. So if I were to randomly suddenly stop feeling tired and let me quadruple my step count, that would be very nice.

My symptoms have remained constant throughout 24/7.
 
ryanc97 said:
My fatigue has remained the same since day 1. So if I were to randomly suddenly stop feeling tired and let me quadruple my step count, that would be very nice.
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That would absolutely be very nice.

The issue isn’t with the observations, it’s with the interpretation of the observations with regards to causality.
 
ryanc97 said:
Well, that’s were we differ in beliefs :) tell that to the ladies with enough NK cells that experienced remission on Dara or Cyclo

Congrats on your remission! Becuase the trial was small and unblinded, it’s not the drug, it’s just your placebo. Since there is no real effect, congrats on quadrupling your step count and going back to exercise with the power of your mind!

Throwing evidence away is just lazy imo.
Click to expand...
I wish science with clinical trials was cut and dry but one thing I’ve learned is that placebo is huge. In my local group a woman was in the Reclaim trials for pentoxifylline she swore she was having stomach upset but was ok with it because she was getting an increase in baseline and could now move around. Typical pentoxifylline side effects. When the trial was unblinded she in the control, she was absolutely mystified and was convinced she was taking the real medication.
 
I see you just invoked an anecdote there ;)
ChronicallyOverIt said:
I wish science with clinical trials was cut and dry but one thing I’ve learned is that placebo is huge. In my local group a woman was in the Reclaim trials for pentoxifylline she swore she was having stomach upset but was ok with it because she was getting an increase in baseline and could now move around. Typical pentoxifylline side effects. When the trial was unblinded she in the control, she was absolutely mystified and was convinced she was taking the real medication.
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Isn’t this the same level of evidence as a treatment anecdote?
 
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