I just had a discussion and couldn’t offer a research institute or a basic pssd study that goes beyond the work of the Uni Milano.
The Baylor study revealed 3800 altered expressed genes and led to the AR overexpression hypothesis. Wouldn’t such a question form the basis for a pssd profile and enable a pssd working hypothesis.
But apart from the University of Milano there seems to be no research team in the world that is interested in the topic of pssd.
I agree. A Baylor Study for PSSD patients is 100% the way to go. I think it’s extremely likely to show the same findings. The PSSD community are wasting their time looking at neurosteroid levels in rats.
I find it so strange how far behind the PSSD community are given their size. We’ve really been blessed with John Santmann, Axo, Mitch, Awor etc.
Rxisk founder Prof. Healy is fighting so long for recognition through the EMA and for rising awareness against not only Merck, he is fighting David against Goliath against the biggest pharma cartels Eli Lilly (Prosac), Pfizer (Sertraline), GlaxoSmithKline (Paroxetine), a great deal, the community is brave fighting for awarness, but the studies made for pssd, for my very personal view, have nothing to do with coherend research from a basic study to a work hypothesis. I’m so engaged as a father, no time to lose! Every day this psychmeds given to children as off label prescriptions as the worst, even when not allowed for infants.
I saw their latest research initiatives and it seems like they are digging in the wrong direction if the AR overexpression theory is right?
Baylor took forever to materialize for us because of the academic route
As awor said the commercial route is probably way better, as we are doing now
My point was that they’d be better off doing a study to show any changes to androgen receptor expression in affected tissue. The findings of that could then steer them towards our direction. Yeah commercial is definitely the way to go.
Didn’t Baylor take forever because it took 5 years to get enough patients to agree to give samples?
that was one of the reasons
the other one was the extensive review protocol even after they had finished the study that made us wait years
What is the exact difference between the studies about to happen and baylor in reference to speed of findings etc? You mentioned a distinction between academic vs commercial. Maybe this is a dumb question but both are taking place in academic institutions by researchers, what is the distinction?
distinction is the academic research has strict guidelines where they cant disclose any information until the report has been verified by third parties (i think).
with the commercial route we can potentially get data in almost real time
Sure that makes sense but I don’t understand what exactly distinguishes the two besides the outcome in respect to getting results in real time versus after verification? What apart from that?
im the wrong person to answer that. probably has something to do with the academic verification process and the implications regarding it.
Maybe it differs between different institutions. U.S. institutions seem really messed up compared to European ones tbh.
they all suck balls tbh
covid vaccines got rolled out at lightning speed when they abandoned the regulatory process
now we’re back to the same old shitty slow slimy sewage infested rotten system where we dont know if were gonna die before they accept treatment that can help us
This is why awareness efforts must accompany fundraising. It will make it a lot easier to bypass restrictions.
There are individual clinical. trials taking place. So it is possible. But we need to hit awareness hard.
I think because we’re a rare disease group the fda would also be lenient towards us.
I also saw another rare disease fundraised through corporate fundraising, and they collected mid 7 figures I think.