Baylor study questions

General Discussion
#22

Guys,

Hold on while I to strap on my armor for this one…

The last thing I want to do is include any negativity into peoples thoughts, I want the results of this study more than anything in the world. However I do want to check and make sure we keep our bets and hopes on this study rooted in reality…

My main concern: Is there ANY actual concrete proof that this study is in fact going on? I am not trying to stir up any antagonism here, please understand that; but I’m truly skeptical about the veracity and priority of this study. I understand it’s on the Baylor website, and it points to the doctors who are leading the project. However, this study has been going on for so long; but the only real information we have is from moderators who apparently have an inside connection on what is happening. I of course adore the moderators here, but this doesn’t really strike me as evidence. Regardless, we seem to be putting all of our eggs into this basket, seeing it as our one true hope.

When I call the University they have no awareness of this study… when reaching out to the doctors over email, I get no response. When seeking elsewhere online, there doesn’t seem to be much of any reference to the study beyond whats in these forums. I hate to sound like a conspiracy nut, but I would not be surprised in the least if this was just a way for Merck to dangle a carrot out in front of us, as a way to give us false hope that a massive discovery is right around the corner. This allows Merck to push the ‘goal-post’ further down the line, so we don’t focus on their company and become completely hopeless for a cure, which would make us even louder.

Another honest question: why is everyone so certain that the study is about to come out in a few months, or even 2019. Again, Trust me, I pray it does. But again where is this information coming from?

All I’m trying to get at is “Compelling claims require compelling evidence” and aside from the university web-page and a few posts from forum members, I really haven’t seen much evidence that this study is in actually taking place; and if so, if it’s even a true priority amongst the faculty there.

Again, I know this is coming off as incredibly pessimistic, and I’m not trying to make enemies. I want to keep the hope alive. But I think it’s fair to get a complete and realistic picture of the evidence around this study before leaping to hopeful conclusions.

Please someone prove me wrong by showing there is actually some concrete proof of progress here!!

2 Likes
#23

Strap on your armour I like that one …
I wanted to say something along those lines myself but didn’t have the balls.
I was chatting with another forum member earlier today and said something pretty along the same line about big pharma .
As for waiting around for studies to solve our problems NO THANKS personally ive been vocal and spoken out to doctors about these side effects and im persistent at chipping away to get real answers.
We all need to take things to the medical world and urge them to help us people are living in misery for years on end some guys are even suicidal due to the lack of help.
I sat back for years waiting for things to get better by themselves waiting for information / help and support with the problems but as we know nothing comes from nothing , sitting quiet just adds to the problem and does nothing towards getting things sorted out.

Studies are needed and im very grateful to hear they are taking place we have to understand it all takes time and effort its a slow process which is very frustrating.
In the mean we can’t just wait around waiting we have to do what we can for ourselves and each other by reporting adverse side effects at every level possible and visit doctors to get them in the picture this will help us get the message home I know from experience it’s not easy talking about these things to them but banging on to each other trialing this that the other isn’t anywhere near as productive as getting professional help.

We have thousands of members on this forum we all need to speak up push things along whilst the studies take place let’s not watch the time go by doing nothing.

Keep marching on guys we will get there together.

3 Likes
#24

[quote=“Scott.H, post:22, topic:32277, full:true”]
All I’m trying to get at is “Compelling claims require compelling evidence” and aside from the university web-page and a few posts from forum members, I really haven’t seen much evidence that this study is in actually taking place; and if so, if it’s even a true priority amongst the faculty there.[/quote]

It has also been announced by the PFS Foundation and there have been members on this forum who have participated in this study and have talked about their experience, when the samples were taken.

So, the study has been referenced and confirmed by all involved parties: Awor who was involved in the study design; the PFS Foundation who co-financed it; people on this forum who provided the samples; and the scientists who make the analysis. What more do you expect?

2 Likes
#25

Guys I understand the frustration and i want the study to be released as soon as possible as well. All I can say is that I’ve spoken to Philip at the pfs foundation about Baylor. It is a genuine study and is happening. You can contact him yourselves as well. The foundation is for everyone and we need to stick together and not fight each other.

5 Likes
#26

Thanks for those responses guys, much appreciated. I can understand these questions would make people’s blood boil, and again, I’m strapping the armor on so let me have it. The last thing I want to do is start any kind of fight or disruption among the group, I adore you guys and rely on this community every single day. Not trying to attack anyone’s hope for an ultimate cure, I’ve placed the same hope into this study’s release as well. I’m simply asking really straight-to-the-point questions because this Baylor study, time-and-again, gets referenced in this community as the end-all FINAL glimmer of hope for getting any real understanding of the syndrome and an ultimate cure.

Couple questions (my sincere apologies as I understand these could read as border-line condescending):

  • Aside from the forum posts, those that participated in the study itself - is there any kind of documentation to show? Or correspondence with the University? Any kind of physical proof that demonstrates the person participated in the study. I understand this sounds almost belittling to those who actually did the study, and I’m sorry, but I’m at a point where a simple forum post does not constitute physical proof. We know how frauds have infected this forum before…
  • The Foundation announced the study; however who exactly initiated the study? Excuse my ignorance, but was it the foundation itself that got this study going? If so, my apoligies. Or did the study begin outside of the foundation (or internally at Baylor rather) and then the PFS Foundation announced it? Major love for the Foundation either way.

It would be nice to have some element of 3rd-party proof showing correspondence between these doctors and the outside world - whether that’s email correspondence, appointment documentation, or any kind of psychical proof demonstrating that a major study is underway. Please don’t hate me!

#27

I have been holding this back for some time but well… I , ironically, work in the Biotech world. I dont work for big pharma. My company helps small startup biotech companies connect with investors, do public relations, do IPOs, etc… I personally am just an IT guy. We deal with dozens of companies day in and day out who are conducting clinical trials. I have a really hard time believing that a company is taking 3 years to parse data and release results of a trial (Baylor). I understand the challenge of that study. I cant imagine how they were able to accomplish much as most trials and research cost 50-100 million dollars. I am a bit suspect of the lack of data that has come back at this point. I’m not saying this to be super negative as I know a few of the admins here are heavily involved in that research. All I am saying is, as someone who deals with companies who are running research all the time, something seems off about the timeline / deadline. I mean… how much data could they possibly be analyzing? Did they run out of money? Or is it just totally inconclusive?

My fear is big pharma is holding any info ransom and threatening to kill funding to Baylors other programs if they dig too deep.

I would donate if there was a little more transparency on deadlines, who the team of doctors were, etc… I cant say I have read everything about the study but it seems hard to find very much that is assuring.

Sorry… I hate being negative. I feel like shit. Have horrible insomnia and cant imagine anyone curing what we have.

On top of all that… my wife is about to leave me because I literally have to sleep in a separate part of the house and take tons of meds just to get 4 hours of sleep. I’m almost useless in parenting our 2 children and they basically hate me because of who I have become.

6 Likes
Brainstorming ways to fund large amounts of money
#28

I see my post was moved from a different thread and that is probably for the best. I was also wondering, with the money that does get donated, is there every any reference as to how much money was raised and how it was spent? 3000 members if a 3rd of them gave $100 a year, that would $300,000. Is there money coming from anywhere else? Sorry… having a bad day and feeling very frustrated.

1 Like
#29

I am sorry that you are in a bad place mentally, physically and family-wise, Shellnyce. I understand your frustration. But it does not help our cause to vent like this. The Baylor study exists and it is processing. I now it would be nice to now more, but I am sure the people involved have very good reasons not to become more specific. I assume that being more specific now would be detrimental to our cause. Any more detailed explanation why things take so long, would likely include details about the research that are not supposed to come out now. Such details may prevent the scientists to publish their findings in a reputable paper and/or give too much information to the enemy. We need to be patient.

Unfortunately, our resources are very limited. In fact, most of the money has been donated by a very small group of people including the head of the PFS Foundation who is the father of a PFS suicide victim. This is, of course, not helping with large and expensive studies like these. Unfortunately, raising doubt about the studies and unrealistic expectations with regard to study updates is further undermining the effort to raise money. There is only one way to get out of this mess: to support the research efforts by all means. Please reconsider your stance on donating to the Foundation.

4 Likes
#30

I apologize for my negative comments and I hope it doesn’t bring anyone down. I have been trying to stay positive for many months now. I’m so sleep deprived I dont know what to do. An Ambien only gets me 2-3 hours of sleep. I hope that all of the time, effort and money spent on the study brings great clarification and some treatment options to all of us. Thank you for your dedication and efforts here.

#31

Someone has to interpret the data, then write the white paper…That is probably what is taking so long is the interpretation of a novel condition…

If you look at the last paper written by Khorea and Goldstein on Epigenetic drug induced endocrine disruption it seemed to be laying the groundwork so to speak for the study…Like a prologue if you will…I expect it to be something similar to that classifying the condition as an endocrine disorder from epigenetic drug induced alterations etc…or something similar to that…

2 Likes
#32

I believe either @awor or @axolotl posted that Baylor uncovered something “highly significant” during the initial analysis that required further investigation? This was given as a reason for such a long delay.

It does make sense that they would publish a comprehensive article that includes the initial finding and the additional analysis, rather than publishing two separate articles.

4 Likes
#33

Dubya I hope you’re right about the significant finding part

1 Like
#34

Does anyone think that the study will be so “significant” that it leads to Propecia being pulled off the market ?

1 Like
#35

As long as the “highly significant” findings lead to me choking the chicken again I’ll be happy as a pig in shit

3 Likes
#36

I will be happy enough if it leads to me being able to feel truly happy again.

1 Like
#37

Dubya you’ve been prevelant on this forum, do you believe it’s going to happen?

1 Like
#38

Yes. I became doubtful that the pilot PFS studies (showing overexpression of AR in penile skin) that began in 2011 would ever be published. They were eventually published sometime in 2014. It is a long wait.

Awor has mentioned that he has been in contact with the Baylor research team on occasion and that the study is progressing. Nothing the man has said so far hasn’t come true.

3 Likes
#39

Awesome, nothing cure wise came from that study obviously ?

1 Like
#40

Not really. The pilot studies showed that both AR overexpression, and altered neurosteroid levels, were likely components of PFS.

Melcagni did a study confirming altered neurosteroid levels in PFS patients that was published in 2017 and the Baylor study is focusing on finding the underlying cause of the AR overespression.

1 Like
#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.

2 Likes