Wait wait, so this was the study that took 7 years to complete? Part 2 hasn’t even started yet? What a joke. If this took 7 years, then how long will it take for part 2 to be completed? 20 years?
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It was always unrealistic to expect therapeutic recommendations from this or any single study at this point. It doesn’t work like that. You don’t do one study and that’s it. Unfortunately, this is a complicated puzzle that will only be solved piece by piece by piece. This study was only ever thought of as a single (although biggish) piece that would reveal more about the underlying mechanism. They haven’t met that expectation yet, and even if they eventually do, it has taken way too much time.
There is no way it took them all these years to come up with this paper. So, I assume the “real” one is still to come. But I understand everyone who is frustrated with this whole story and I am certainly not holding my breath anymore waiting for it, while the years pass. If they publish and have helpful findings, that’s cool. If they don’t, they don’t. The staff of this forum is marching onward, with or without Baylor. And everybody is welcome to help!
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How much did you contribute that you feel this was hideous and shameful?
I find it totally shocking that there are almost no studies focusing on the precise abnormalities in penile tissues.
It’s clear that the study of those abnormalities (tunica albuginea, smooth muscle, calcifications, nerves, etc.) will provide valuable information for many of us.
This is why it’s almost outrageous to read that the Baylor study simply performed a doppler scanning, without trying to dig deeper into the causes of the venous leakage!
I am ok with knowing more about epigenetics, but we cannot simply forget this other fundamental path - penile tissues changes that explain erectile dysfunction.
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Sadly not even that…The selection bias is just too big to start…
20 young patients with already known erectile dysfunction were tested…It was found they have pathological readings…Now did it come becuz they used Propecia, or was it just mere luck that they used Propecia, and were either way destined to have ED…You can never prove it, as nothing was known about those patients before presenting themselves. Only thing that might link proepecia to this kind of pathological readings, is if these measurements were extremely rare, and highly unexpected, and more of PFS patients were tested and showed the same rather „Rare“ readings. Assuming they tested a control group that is healthy (This way to exclude human, and device errors), and another group of young men with errectile dysfunction who didnt take Propecia (To show with the same method and device the expected measurements with ED at this age is totally different and expected)…
This is just a report…Not a study to prove anything…He tested, he reported…Soemthing any PFS doctor can do, if he had 20 PFS patients at his disposal…Only it would take him 7 weeks, not 7 years, and surely only 1% of the cost.
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To me it seems like Merck just looked up who the foundation was funding and then gave the researchers sweeter deals if they either effectively sabotaged (Harvard) or slow-walked (Baylor) their work for the foundation. I am very saddened that the outcome was already evident many years ago and no action has been taken to remediate the effects or pivot to doing the research a different way. Instead it’s basically just awor and axo begging thankless and entitled members here to take their sweet time filling out the survey very gradually across more than a year now and then eventually hoping to accumulate enough evidence to raise their own funding from public sources. 
The years keep going by. Most of us will miss out on the loves we wanted in our lives and the opportunity to make a family and have purpose in their lives rather than slowly turning into wrinkled wage slaves alone on the sidelines while all their friends from youth have advanced to the next stage.
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I also think it is a mistake that the foundation has focused on removing the drug from market. That put us in direct opposition to the drug companies. Instead, perhaps everyone could have had unity of cause wanting to understand the drugs and provide more information to potential patients while treating the small minority that suffer negative effects. Perhaps Merck could have lived with our work if we hadn’t directly threatened their business.
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There is no conspiracy anymore, it is as clear as day that Merck and Co have got involved and Khera has sabotaged the study, a man that had accepted payment from Merck in the past in the sum of 30k had already had a conflict of interest; there wasn’t due diligence when scooping for a suitable university without factoring in influence but I’m not here to play the blame game, the damage has already been done. Think about it, if Khera revealed the scope of the damage in one blow that would set up Merck and Co to lawsuits that could run into hundreds of millions, perhaps billions because of the true extent of the damage, the university also receives millions in donations from the pharmaceutical industry and they aren’t going to bite the hand that feeds them. It’s time to move on, it’s time to get our heads screwed on and think about the future and to never put all our eggs into one basket again, these types of studies need to be run year in year out and to do this we need to pull together and start finding innovative ways to raise funds, I just seen a mother and father raise 2 million in Ireland for a baby with a disease for genetic therapy there’s no reason why we couldn’t do the same.
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You guys are completely out of touch with reality if you think Merck interfered with this studies, especially after Khera has published two studies this year that are very supportive of PFS. There’s no proof for these claims and it’s not healthy or realistic to think Merck’s tentacles are the explanation for each time something doesn’t go your way.
These horrible attitudes really make me feel like its no longer worth it to contribute to this community or cause. I am suffering along with the rest of the community in the same way, but so many people here create a whole other layer of suffering for themselves that is just unnecessary.
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None of this is fated. It is possible to start a family and be in a relationship even if you have sexual dysfunction. It does make it a lot harder, but if it really is that important to you then you will be able to find a way to get over the obstacles and make it work. If you don’t want to , that is completely fine, but that is a choice you’re making. For me, it’s not worth the effort but maybe it will be one day.
Having PFS can impact your career but if you care enough you will figure out how to use your natural talent and live your best possible life. PFS has caused me so many career setbacks, but I found a position now that I am very grateful for and it works well for me. I am not a wage slave. It was fucking hard as hell to get there, but it was very important to me so I made it work.
There’s a mourning period after you first get PFS but it is weak to continue feeling sorry for yourself for many years. It took me far too long to get to this point, but I now can see PFS as this terrible thing that happened to me and I have done my best to adapt my life to the new normal.
You need to figure out what the most important things are in your life and find a way to solve those problems. Don’t let yourself mourn this loss for the rest of your life.
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I’m sorry, but you are out of touch with reality, it does not take several years to do such a study, if you think otherwise you really need to take your head out of the sand. What makes you believe sincerely that a company is going to freely allow for information to unfold that would implicate them in mass lawsuits that would equate to hundreds of millions- my God man wake up, I’m so tired of people trying to sugar coat this for what it is. It’s necessary to speak the truth whether it looks to you to be negative it still needs to be said, people have held onto this only hope for years now only for it to turn out to be another devastating blow. We need to move on and starting garnering ideas to raise capital and get studies done annually.
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Part of what frustrates me on this forum is people here don’t even realize the things they have no clue about.
You have no idea how long it takes to do studies. Some other member here, I forget who, works in biotech and very clearly explained it can take years for studies to complete. What has been published already was not main study. It was kind of like a preface, but it was worth publishing separately.
You also don’t have the slightest idea what kind of scientific information is needed in a mass tort litigation. Baylor’s study, if the results had been favorable and published in time, would not have been very helpful. Other studies were very strong and those were magically published somehow.
Go form your ideas and raise your capital. If you’re successful, you’ll benefit everybody here. You should never place too much hope on any specific outcome, because then it will most likely disappoint you.
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Listen, I’ll leave it at this let’s wait and see the Baylor study in black and white and see who was right and who was wrong. Have a nice day
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I agree, black and white thinking is a great way to look at really nuanced situations.
It should not take seven years to publish a study of the depth and breath (or lack thereof) which was published by Khera. Examining penile structural changes in a handful of men is not a seven year undertaking under even the most adverse of circumstances.
I challenge you to find one person in the industry who would disagree with that.
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What is it that people on here don’t understand about this? The recent article that was published was not the main study. I took them a long time to collect the data, apparently until 2018 according to the article, but this could have been published anytime. That was something he didn’t even need to publish, but decided to it anyway because he found the Doppler results were worth publishing.
I hope you are right, but it’s natural for people to want to understand how things came to be the way they are, and in the absence of any reasonable explanation for all the delay, you can’t blame people for thinking the worst. You can’t blame someone for thinking something’s a duck if it looks like a duck, swims like a duck and quacks like a duck, and no one can think of any conceivable explanation for why it would do those things if it wasn’t a duck.
That said, we need to move on. The worst thing we can do is cry over spilt milk. The failing of Baylor means we need to open a new chapter of taking initiative ourselves and DOING, not sitting, DOING. All of us. Crying and complaining needs to be what we did in the past and only the past.
I relate the sob story only because I think a lot of younger guys here, like all of us when we were young, don’t really think in the long term. I know when I was 30 I didn’t give the slightest damn about whether or not I would get married and have kids. The main reason, though, was that I simply hadn’t thought at all about the consequences of not doing so. It would have never occurred to me what it might feel like when everyone you know eventually moves off to that stage and how pointless it feels to do work without any larger purpose. I sound really depressed but I actually am still holding out hope here. But it’s cutting it extremely close at this point. I think if more people had really faced the consequences of our predicament and recognized its time-sensitive nature, then a lot more serious action would have transpired here by now. I fear it may be the case that by the time guys recognize the true gravity of the situation, the time they most desperately wish they could have back may have already elapsed. So we get wave after wave of people looking for quick fixes and just throwing in towel when they don’t get results only to have years go by before facing that it really isn’t getting better on its own or by “waiting for Baylor”. Meanwhile, no one puts in the work that will necessary to ever get a cure (i.e., long term endorsement and facilitation of research).
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If only we could raise enough money to duplicate the Baylor study outside of the US we would be able to get the results much quicker with private scientists, a study like this should have been out months after it was done not 7 fucking years, so much for “significant findings” the PFS foundation should remove Kheras study from their website in my honest opinion. Recruiting more people with PFS For a study like this will take time which is the hardest part aside from the funds.
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When I first got PFS and as soon as I oriented myself in the whole pharma cover-up practice, as informed by the Vioxx case and others, and especially when I learned what had previously happened with the Harvard study, and that Khera has taken money from Merck a month after the Baylor study was announced, it became crystal clear to me that the Baylor study needs to be immediately forgotten.
I have been writing about this on this site for years only to be accused of spreading “conspiracy theories”, not understanding how research works, not being grateful, etc.
I have maintained from the beginning that the key aspects of Baylor need to be replicated as soon as possible by us in a new study with newly raised funds on PH, which is entirely doable. If a single person can go to a commercial lab and test the expression of a gene, 30 of us can do it as well. I am not necessarily saying this is the best way to do this, just a way. Obviously it would be best to find a lab that is willing to do such a study.
It has been my belief for a long time that the most promising single gene to test is SRD5a2 in prepuce. If this gene is not expressed and DHT in tissues is low, thousands of other genes will also show altered expression, which is what I believe Baylor would have shown. I have provided lots of evidence why this theory is promising, but even if the theory is wrong, it would be still useful to disprove it and rule it out.
I have written a lot about all this and have lobbied hard for action - urgent action as if the house is burning, as it is. I am convinced that hundreds of people here are ready to contribute for a concrete research project with a concrete goal which will give definitive answers about PFS etiology but they have not been given the opportunity to do so. Instead, we have waited for many, many years for the mythical Baylor study.
That we have failed to do this for so many years is a considerable failure of organization, in my opinion, and most importantly - of leadership.
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