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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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@deleder2k can you say more about this? Any theory that Fluge and Mella can say why it happens?
Hi Gijs,
I would be interested in your source for these German pilot study? Really, no positive result at all?
Interesting that she mentions 30% ( at ~6:56)
Not much.. Mella said at his presentation at Invest In ME that one patient responded the day after cycle, and two others within 4 weeks (if I am not mistaken). I do not know why cyclo works, and why it works so fast. It has effect on the B-cells like Rituximab, but there is also a lot of other stuff going on that happens immediately when giving cyclo.
Perhaps you could care to comment elaborate why cyclo works, and why it works so quick in PWME?, @Jonathan Edwards? No one knows for sure, but I trust you have a pretty good idea!
But if it works for some, you know? Specially rapid response after being a non-responder for Rituxan.Cyclo hits so many things that I think it is hard to know how it might work.
But if it works for some, you know? Specially rapid response after being a non-responder for Rituxan.
At this point, i care less about mechanism, and more of having a drug that works. The drug toxicity profile is still acceptable in my eyes if there is a chance of improvement in functionality.I don't doubt it might work, but I wouldn't want to put my money on any one particular mechanism>
Here is my theory. It is all a matter of reservoir.I agree, Deleder2k was hoping I would have a theory, but I don't!
I agree, Deleder2k was hoping I would have a theory, but I don't!
Cyclo hits so many things that I think it is hard to know how it might work.
You always have a theory! I'm guessing you have one now as well
I wonder if RTX and cyclo would be something together.
My treatment schedule (in my experimental fantasy world): plasmapheresis followed by 1g IV prednisolone, then Cyclo+RTX, and some mycophenolate mofetil to keep b-cells from growing.
Couple Random thoughts/ puzzle pieces :
Rituxan and cytoxin together are basically treatment for CLL . So if it works for that and us, wondering how that could be interpreted. Could this be some form of leukemia ? Or somehow related? Or what do they have in common ?
Also w/ cytoxin targeting fast growing cells and therefore hitting the gut pretty hard. Wondering how that fits in w/ the whole microbiome thing.
The woman is definitely type A. She cuts off the men in the video almost every chance she gets. I like how she says CFS patients usually die from suicide and then laughs about it LOLHere it is:
The woman is definitely type A. She cuts off the men in the video almost every chance she gets. I like how she says CFS patients usually die from suicide and then laughs about it LOL
Not that I understand much from this video but its kind of hard to take it seriously as she seems to indicate that she figured out CFS from the moment she saw her first patient
Well, I learned a new word today.A perspicacious comment, I think!
Well, I learned a new word today.