Baylor study questions


#41

The results would have to be very concrete and highly convincing to move the needle. The reason is that the studies have very few participants and therefore are often dismissed by the main stream. I have personally presented a highly intelligent doctor research on PFS who has dismissed it due the small number of study participants. Statistically not relevant was the term he used or something similar. Only an eye opening uncovering of the biological mechanism behind PFS would be able to overcome this scepticism. It would have to be a tour de force that basically forces you to accept it.

Probably multiple studies expanding on the initial findings will be needed to reach such a point.


#42

How can you confirm nuerosteriod levels? I was under the impression this was not testable. Would you mind explaining and also linking me to the study (I have a very basic understanding, of any at all, about all of this)


#43

This required a spinal tap, meaning it can’t be easily used as a diagnostic tool as a routine blood test could be.

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Let’s hope that this is what Baylor delivers.


#44

Has anyone tried the oral pregnelone ?


#45

Interesting. So do decreased levels of the listed neurosteroids explain why we have our mental symptoms? Something is obviously missing or we would have our answer


#46

Rmoney96
Straight to the point about choking the chicken lol
It would be a dream come true mate we could actually feel like a man again.


#47

Guys excuse me, does anyone has the full text of Melcangi’s study on PFS, i can’t find it.
Thanks ; )


#48

This seems to be a very likely component of depressive/anhedonic symptoms. Low neurosteroid levels have been found in depression, PTSD, and Multiple Sclerosis. The levels of the PFS patients tested were extremely low though.


#49

Got it. Can these be increased with medication?


#50

Doesnt work usually. If I raise dopamine with meds I often crash cause dopamine also raises AR activity. And btw. I believe some of us even have dopamine receptor overexpression.


#51

If I were a scientist and I made some important discoveries in a study I wouldn’t be dragging my feet for years in order to publish it. Significant results of any kind would help my career - get me grants, tenure, respect… However, If I am not getting significant results in a study I would probably shift my time doing other higher priority tasks and the non-performing study would be left aside for when I have extra free time, which may be never.


#52

What Sibelio said.
If so many admins are on board with the study why don’t we know why the study is being delayed. What good reason is there for the researchers to hide even the reason for the delay.
Everybody says the study started in 2013 and ended in 2015. 2018 is ending now. What possible reason is there to avoid even revealing the cause of delay to people suffering so much?
Don’t get me wrong, I want the study to be published, it is ALL I am living for. This study is the only anchor that is holding me and many others in place. And I am not even PFS. I am PAS.

But it is so disheartening to hear the same sentence “Be patient its underway” every day every year. The research lab owes nothing to me, if there is nothing to show just tell people and move on, what’s the use of leading on tortured people like that.
IF the study gets published AND IF the cause is discovered AND IF a treatment is discovered AND IF the cause applies to PAS AND IF the treatment applies to PAS, it will be years before the treatment before reaches the market at insane prices. fukc me


#53

Awor described the cause of the delay, he said it is the amount of data that has to be processed. You won‘t get a more detailed answer like this, besäuseln they don’t want to reveal more about the scope of the study. Others have speculated or have heard on the grapevine that the scientists have made a significant discovery that they want to explore further. I don’t know if this is true, but it may be another factor contributing to the delay.

I know it is incredibly frustrating to wait that long. I am sure that is true for all of us, including those directly involved with the research. And this study likely won‘t even be the end of our research efforts. We will have to be incredible patient for a longer time.

Believe me, I know how much it sucks. But it is what it is. The best we can do is to support the research in every way possible. Let‘s not forget that it took the researchers almost two years to recruit the necessary numbers of PFS patients. That’s ridiculous. And let‘s not forget that this is an attempt of bleeding edge science on a shoestring budget, because few people donate to the Foudation. For all the complains that reasonate with me, we also need to point out that this community has not covered itself with glory either. It is a miracle that a study like this is in the works at all thanks to a few very dedicated individuals. We all can do our share that things move faster in the future: donate, participate! Otherwise we have no right to complain.


#57

Does anybody have any thoughts on how what the Baylor Study finds might relate to those of us with PAS? If they find a mechanism for PFS, might it be the same as PAS?


#58

I wouldnt expect too much from baylor guys. It likely will only be a step in the right direction not a silver bullet. Living for baylor results or something similar like someone said is the wrong way to think about this process.


#59

I know its the wrong way, not that I am flaming you. It is what it is. And I too don’t expect anything from baylor.
It is just the next thing I am raising my hopes for, when that passes I ll have to find something else to anchor onto.