Baylor study delayed again

#1

The Baylor study has been delayed a number of times, was supposed to published by now.

Newest info is that it will be another 6-9 months still.

#2

Can we expect anything significant to come out of this study ?

The harvard study told us little or nothing about PFS.

#3

Wow, just wow. Symptoms getting worse everyday probably won’t make it another 6-9 months

#4

If they actually investigated what they said they were going to then yes it will be significantly good or it will tell us that we need to look in an entirely differently direction.

#5

Thanks for the update moomman. How about the Italian study? I emailed them about a month ago but no reply.

I’m very anxious like everyone for some real news. 6-9 months at least makes it this year. Sort of running on fumes anymore. Some good days occasionally. Did Baylor provide any other info. Do you think the information you posted is credible?

#6

Where did you get this information moonman?
I participated and I have heard nothing further.
Hopefully we will also hear from the Italian study soon.

#7

Any update on the Baylor study ?

#8

Don’t know. Maybe there was another delay caused by the hurricane.

#9

4 days to deadline. :smiling_imp:

#10

There is a lot of data that needs to be analyzed, which takes time. As unattractive as this may sound, please be patient.

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#11

My urologist sent an e-mail to Dr. Khera, who’s said that the study is complete and should be out early next year.

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#12

Is there any new “Insider” knowledge about when to expect Baylor and Melcanci II?

#13

I hope this doesn’t sound ungrateful or unappreciative of the authors’ efforts, but I doubt the authors of these studies realize there are thousands of men who are literally running on fumes waiting for any progress to be made on PFS. They would probably feel a bigger sense of urgency if they knew. This is literally a life and death issue and the longer it takes, the more people will be lost.

#14

Unfortunately Sibelio, it’s a question of money. More money means more manpower to analyze the data. That has been the issue since the inception of the foundation. If people had put a few of their chips on research, we’d be much further along than we are now. And if they don’t put those chips down now, more time will be wasted.

To everyone who sees this post, make a conscious effort now. Don’t just read this and say you’ll do it later. Go to your PayPal now and just throw a couple bucks in the way of research. Every dollar you donate makes the answers come earlier.

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#15

It would be a blessing in disguise if a very wealthy person has post finasteride syndrome and they didn’t know they had it, imagine if they did and found out about the foundation, what they could contribute.
I hope nobody else gets it, but if someone has to, i hope its someone wealthy, i know that sounds bad but i hope you get what i mean.

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#16

I understand your frustration. We all want progress fast. The Baylor study was (co-)designed by members of this forum. And the scientists may be aware that some of the PFS patients that are subjects of their study have unfortunately committed suicide since. So the scientists probably have an idea of the severity of this problem. Nevertheless, we cannot expect them to sacrifice their lifes for us. It’s a job for them. And they are top class scientists, so I am sure they are taking it seriously and are not slacking off. We cannot expect more than this. Unfortunately, science moves very slowly, far slower than any of us wants.

I can only support borax’ comments. He is spot on. We all can speed up the progress at least to some extent by making sure the scientist have all the necessary resources available. For that, we have to donate to the Foundation, and for that, we have to show up when studies require PFS patients to provide samples etc. Unfortunately, one of the original delays of this study was caused by the fact that not enough PFS patients volunteered to take part in the study. We only have ourselves to blame if we don’t donate and do not participate. Our problem cannot be that bad then, if people cannot be bothered to contribute, can it?

Unfortunately, this is a very complicated and very niche problem at the frontiers of science. And we are a relatively small group with few resources. That’s why everyone has to chip in. This is not cancer research where companies and institutions invest billions, where average joe’s contribution is a drop in the ocean and where everyone can wait for the professionals to do their job. Here the contribution from everyone matters. We are such a small group that we cannot count on others to do the job. We have to do it ourselves. If you and me aren’t doing our jobs then there is noone else. This is a small community.

I know many people have had their careers destroyed and some are financially depended on others, but anyone else who is not barely surving on his wages can contribute to the Foundation. And the others can still participate in studies when patients are required or can contribute to other projects that seem to be on the way.

We are fortunate enough that this community has people like Awor, Mew and others who took it upon themselves to involve scientists and help set up a foundation. This is tremendous work. If you look at similar communities often of larger groups, they are not anywhere close to the kind of muscle that this community has developed thanks to the work of a small group of people. Now let’s make sure that we all do our share.

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#17

If we have so much AR receptors, and this is the root cause of PFS, and also the older mens haver too much AR receptors (because they are growing in number over time, and this is the reason why even with testosterone injection you cannot recover your 20st status of your body)…
I am incorrect if I think that, in case the cure of PFS is discovered, that will means that the rejuvenating elixir have been discovered?

#18

So I read a little about the Baylor study. It looks like it won’t give us any immediate and actionable treatment protocols. I am still new to this so forgive me if my questions are naive but isn’t it possible and wouldn’t it be most efficient to have studies with rats? For example, give rats finasteride, observe if they get PFS (we already know their penises shrink and neurosteroids change, among other effects) and then administer multiple treatment protocols to see if any of them reverse the condition. Rather than use people as guinea pigs and throw protocols at them, which is what most specialists seem to be doing (and people on this site as well), this can all be tested rigorously in a study, at least in theory. Have any such studies been done? I know this is a question of money but it seems to me that rat studies would require generally less money and could be done faster.

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#19

Unfortunately not yet. The changes brought about via large long term doses of finasteride administered to rats is not PFS. If this were the case, every man on finasteride for a long time would have severe PFS. Myself, awor, now Tzinkman, many of the suicides show that the severe end of PFS is triggered in certain people after a tiny amount. We hope to gather better data soon, but it is my personal thought based on observation reading all the cases I have that the severe side of PFS is more often seen in very short term users. PFS is a disease state in the absence of the drug, in many cases occurring and developing completely off it, including long term users; Zodiacs is on the milder side and took it for many years before developing his problems on withdrawal. I took 0.25mg which gave me pfs and crashed 2 days after horrifically. Severe physical deterioration and still ongoing pain onset a month or two in. It ruined my life.

So it isn’t just a question of money, it’s a question of PFS being a specific and rare reaction that the predispositions of and molecular level effects of are currently unclear. Until that’s further elucidated it can’t be effectively modelled. It’s a very complicated situation and unfortunately one study isn’t going to provide an actionable treatment. Baylor’s findings will hopefully be a great grounding for further studies, and hopefully before then we’ll be able to launch another really exciting and necessary project.

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#20

Cant complain if you are not donating. The foundation is experiencing the classical free-rider problem. I.e. people want to benefit from research but are not willing to contribute to it. The absurd thing about this free rider mentality is that A) it guarantees that due to lack of resources no research will be forthcoming and B) it leads to people wasting money on frauds like cdnuts.

I would want to add that one shouldnt contribute once. One should set up an automatic monthly recurring donation schedule via paypal (I think one needs to register a credit card via paypal for it to work). Donate a monthly amount that is acceptable to you and that you can donate consistently. This way the foundation can plan ahead with a constant income stream and you dont have think about it anymore.

Anyway, I think the community has no right to complain because we have not stepped up and contributed.

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