If you haven’t done the survey yet then please, please do so guys. You might not feel that it’s important, however its significance can’t be stressed enough. It’s a single hour of your time yet it’s quite literally the most effective thing you can do right now. Alongside that is the effort that the moderators have committed to creating this thing for us. It’s nice to show a bit of appreciation. Without the effort they commit to this forum we’d be alone in this hell and well and truly f*cked.
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I understand why you did it and that you did it with the best of intentions but it’s
no surprise really that that was the outcome. We should concentrate on reaching out to affected people and not those who are in the business of selling this stuff.
The social media manager who banned you probably has no clue of any of the specifics and just has to make sure the company isn’t smeared. If any of it registered with them at all, they’ll be aware of the drugs the company sells being approved and are therefore deemed safe. They will probably presume people attempting to say different are probably not acting sincerely. If they hadn’t taken it down, they’d have been fired and someone else taken on.
Attacks on these companies or the doctors or pharmacies that sell their products will likely get us nowhere. We need to make our own networks and spread our message.
Instead of posting on Merck’s page, it would have been better to encourage one more person to sign up here, or to have made a video talking about your experience. I’m not putting you down when I say that, just trying to get the best result for us all. Basically, if you’re going to do something, make it count.
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I appreciate that the survey might not be what people expect to cure this horrible condition. However I trust that Axo and Awor spent many hours with scientists discussing what we need to prove that PFS exists.
The result of those conversations was this survey and if successful we will owe these guys a huge thank you beyond words.
Axo is a very smart guy he didn’t invest so much time into something unless it was well thought out. He wants to be cured of this horrible condition more than most and we are very lucky to have someone of his calibre on our side.
Let’s fill in the survey so we can be recognised. Encourage others to do the same.
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Well said.
Hi guys whats happening with the BBC documentry that was being mentioned a few months ago?
Di Loreto found the AR to be overexpressed (2014) while Bhasin found statistically significant differences in a few of the androgen-regulated genes (2017). Baylor apparently found numerous genes to be deregulated (unpublished). From those results and what we know so far, it is clear that finasteride threw a wrench in the homeostasis of our cells, the wrench likely being epigenetic in nature. We desperately need to understand exactly what happened, so we can try to act on it.
Baylor was designed to provide at least an initial answer to the question of what went wrong, characterize the wrench so to speak. The Baylor protocol (study design) dates back to May 2013. As we know, they have not published yet, and I certainly am not holding my breath (anymore) to the day they might. We’ve got to move on, which means getting the answers that Baylor failed to deliver (so far).
As discouraging as this may seem, it also is an opportunity. The tech needed for this kind of investigation has evolved considerably since 2013. With today’s tools, we’ve got the possibility to get much better answers to more open questions. Another opportunity is to not only ask what finasteride has done to us, but also what antidepressants and isotretinoin damaged. Maybe there is a common denominator in there, which frankly would be fantastic. At least our survey results are giving us some hints in that direction.
We first need to find the right specialists and lab to work on our problem. The existing crew (Melcangi et al.) have reached the end of what they can usefully contribute. We now need next generation scientists who are truly specialized in the line of investigation required. @axolotl, myself and two other guys (PSSD and PAS patients) are working in the background to try to find these people and make what I described above happen. The Foundation is informed and has committed to support us when the time comes. In the mean time, please take our survey and put your donation money aside so you can help us finance this next step once we can present a truly promising, theory and drug-neutral opportunity.
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It was to be part of the Victoria Derbyshire programme which has now been cancelled. It’s possible that the researchers I was talking to will take the story to another outlet but I think we’ll have to concentrate on our own video project for now.
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I would like to asked awor if the foundation paid good money and helped with study etc…Couldn’t they sue over refusal of the information being made public? How do they get away with this?
I was thinking the same thing wasn’t the study like $2000 a person, these people are frauds
The study I believe was 100k from the foundation plus the 2k per person…I could be wrong about the amount but point being u hire these institutions and usually after 2 to 3 years a study is complete and published…
But some studies go on for 10 years…But this one did not and went in peer review which I think after a year in peer review if has not published by now something must be wrong or there is politics involved…
Let’s not turn this into a Baylor fraud thread. If you do, I will shut it down. The truth is, we don’t know for sure what is going on. The guy at the Foundation who is in most close contact with Khera is convinced that Khera is on our side and that other issues are getting in the way, such as the complexity of analysis and getting it through interest vested peer review. I would give them a last benefit of the doubt until the end of the year before calling faul. But sure, over 6 years is highly unusual.
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Thanks for the update awor that’s nice to know…Hopefully it wont be necessary but I guess you could have than redone if you get the funding through an independent firm and not through these academic institutions…
It’s not like Merck will accept responsibility anyway they will never admit it in court regardless of any study done by anyone…I guarantee you they will claim fosamax and the pain killer drug that killed 50k plus people and was removed is still safe…to this day that wont admit guilt.
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I don’t think it’s worth spending time on thinking about this in terms of how someone else needs to pay or compensate or whatever else.
The way to look at this is that we need to pull together and get ourselves out of this.
The sooner the community pulls together, the quicker we’ll start seeing progress.
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My point exactly I don’t care where the study comes from the info is what matters…You are not gonna “prove” it to Merck, they dont care and would never admit this publicly if if a court found it true an awarded millions as before with other Merck garbagr they just pay a settlement and are off Scott free…
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In the end this was never about the possibility of a Harvard fraud, Baylor fraud or any other fraud. It’s about PFS studies being conducted in the US were Merck has the most power to influence with its vast resources.
The Foundation set up both studies and several participants committed suicide. They are responsible for choosing these Universities. PFS patients travelled to these studies, took part and spent money and time. Let’s not forget the emotional investment and hope put into participation. Then there’s the donations made to the Foundation.
I think the Foundation needs to do everything possible to ensure that future studies are conducted in the right environment for success and fairness. There should be an internal review of what has worked and what hasn’t. People’s lives are at stake here. This is real life and not some Hollywood movie.
Will the next PFS study be conducted in the US? I fear many will lose hope if it is, me included.
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It better not be. The problem with the US is that the academic world is too intertwined with industry. Merck and other pharmas are sponsering major medical school and university research with millions per year. In many cases, that is a benefit. In our case, it’s a huge drawback.
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In my humble opinion, as i mentioned already in many posts, the only possible way to understand what is going on, is to establish an animal model of our disease…Its the only way…Trying to do more research on actual human beings, when we cant even get biopsies from the prostate, let alone from brain regions that might be affected, would result in more studies that take decades, and come with laughable results (like its only in our heads)…
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we’ve already gone over that before
before we can use animal models, we need to first understand PFS much better.
so we are like 2-3 steps away from animals
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Any other country you have in your mind? EU maybe, China got good science and will be done for way cheaper than if it’s done in the US…
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