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in there the possibility of synthesizing BC007 anywhere?

G

glazevedx

Messages
49
melihtas said:
BC007 is also called Rovunaptabin, ARC 183 is already available for sale (For research use only).

https://www.medchemexpress.com/rovunaptabin.html
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Jesus. If I had just looked for in wikipedia I would have arrived in this info. You blew my mind. I wonder if more people than the ones trialling it in Europe are taking it. I was told Berlin Cures is having great difficulty to manufacture enough amount for all the participants, according to one of the chief researchers of the study.
 
SleepingGirl

SleepingGirl

Messages
11
I've been waiting for someone outside the trials to get their hands in it so we could have faster results. Berlin Cures was so slow getting the trials started, and who knows when/if it'll be actually available—this stuff takes so agonizingly long.

I've seen a few people on twitter discussing wanting to try. I don't know if anyone really has though.
 
serafim

serafim

Messages
89
i’ve spoken to a few people in the german ME/CFS community and i was told that the people enrolled in the two BC007 studies that they aren’t getting good results (they haven’t heard of anyone improving substantially let alone having been cured) and that the autoantibody test they’re using is very inconsistent (same person gets two negatives and one positive result when tested on different locations). This makes me doubt the entire hypothesis. They conjectured their whole theory based on the fact that 2 people with LC who happened to be involved in the original BC007 trial were cured. Similar things have happened with people receiving different kinds of MABs and cancer drugs but so far none of those results have been replicated in other patients.

I’ve only spoken to 2 people so what i said is purely anecdotal. I may be misrepresenting the situation. But i wanted to share this anyway to caution anyone who wants to try to procure BC007 somehow. It’s too early to tell if it works, it could be completely useless. Don’t waste your energy folks.
 
SleepingGirl

SleepingGirl

Messages
11
serafim said:
i’ve spoken to a few people in the german ME/CFS community and i was told that the people enrolled in the two BC007 studies that they aren’t getting good results (they haven’t heard of anyone improving substantially let alone having been cured) and that the autoantibody test they’re using is very inconsistent (same person gets two negatives and one positive result when tested on different locations). This makes me doubt the entire hypothesis. They conjectured their whole theory based on the fact that 2 people with LC who happened to be involved in the original BC007 trial were cured. Similar things have happened with people receiving different kinds of MABs and cancer drugs but so far none of those results have been replicated in other patients.

I’ve only spoken to 2 people so what i said is purely anecdotal. I may be misrepresenting the situation. But i wanted to share this anyway to caution anyone who wants to try to procure BC007 somehow. It’s too early to tell if it works, it could be completely useless. Don’t waste your energy folks.
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I myself look at the BC007 talk a lot, been following it since the beginning before they even got funded - not just out I wanting a cure, but also because I'm interested in the science of it. I would like to mention I did see some people spreading false information about the studies and to keep that in mind if you're not familiar with whomever you spoke to. It's beyond me why anyone would want to bring down a bunch of sick people like that by lying but I suppose it's expected.

Anyway, half the people in the study are receiving placebo and I believe it is a double-blind study. I was also under the impression patients aren't allowed to disclose or discuss their treatments during clinical trials. So how would those people even know until the study is over if its going well or not? I understand not wanting to be let down, but I don't think having hope for things is a waste of energy, even if it doesn't turn out, it was still something that helped me hang around and stay a little longer. Better then having no hope at all.
 
serafim

serafim

Messages
89
SleepingGirl said:
Anyway, half the people in the study are receiving placebo and I believe it is a double-blind study. I was also under the impression patients aren't allowed to disclose or discuss their treatments during clinical trials. So how would those people even know until the study is over if its going well or not?
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Do you really that’s stopping anyone from talking? Obviously they don’t do it publicly, but they do talk amongst themselves and with other people in the community. I know these people personally. Yeah, none of them know for sure if they’re taking placebo, but all participants they’re in touch with are getting lukewarm results at best. Again, what i’m saying is anecdotal. I’m not trying to discredit the trial. I’m just saying, maybe don’t waste your energy on trying to get your hands on this drug before the results are out. It’s certainly not a miracle drug.
 
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