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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what do you guy think what other country should we turn to?
Russia, India or China?
I would say ideal thing would be 2 countries at the same time and compare the results.
but life is not that easy.
I agree that we are up against an aggressive and unethical adversary. ButI think anger without action is worse than no anger at all. When we are angry we should methodically, calmly, rationally inform people around the web with short and non-nutty sounding mentions of what the long- terms side effects are and what drugs cause them. When we sit around being angry and or lashing out we don’t get anything done except making ourselves look like nuts. The worst is when we sit and complain instead of doing.
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We need a lot of effective basic science, and awareness efforts need to happen in tandem, both for scientists and the public. The clinical situation is very poorly established.
The absolute priority for us has been to establish a clear data set for the symptomatic situation of patients. Thanks to the people who took the survey and encourage others to do so, this is happening. Thank you for the kind comments on this work, and most of all for filling it out.
@Awor and I recently had a positive meeting with an accomplished biology professor and director of a cutting edge European center we are hoping to work with. They were extremely impressed by the survey and the early results coming out of it. They commented specifically on the strengths of gathering responses that answer our questions for different points in time. He emphatically urged us to do all we can to strengthen this data set with as many contributions as possible. It can support mechanistic investigation. More Isotretinoin and PSSD patients are urgently needed, but every Finasteride patient counts too. As others have said, if you haven’t taken the survey, this is an absolute priority. Please do so. It will also catalogue you on our side for contact and potential invitations to participate in the event of research opportunities derived from this effort. And regarding what I’ve mentioned: We’ll talk about it if and when we have something concrete - the ball isn’t always in our court.
Secondly, there is a dire need for outward public awareness that will garner attention and recognition of how this is affecting real people. Please think about pulling together and providing a Youtube video for the project if you’re able - we’ve only had one submission so far. We are hoping to soon reach out to the families of loved ones who took their lives to provide the same if any feel able.
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There is a generic for Propecia so Merck has already written off the profits it got before finasteride went generic, so there is really little to gain fighting Merck alone. You would have to fight the entire pharma industry. It makes more sense to me to educate doctors with the science out there so that the drug gets used less and less and eventually gets taken off the market completely.
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We have a video project, please participate.
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An across the board gene expression analysis in PFS patients will inevitably show that many hundreds of genes are disregulated. By itself, this finding is unlikely to reveal the etiology of PFS, nor will it rule out one theory in favor of another. The epigenetic silencing of just one gene, srd5aR2, the one responsible for 5a-reductase type 2, will change the expression of all androgen-dependent genes through reduction of DHT, and will also influence a cascade of other genes that are affected by related processes. There are ways to disambiguate these effects in other types of studies, however.
As an illustration of the wide range of genes likely to be affected, here is a paper which estimates the number of genes affected by finasteride - 1434 genes. A similar (in fact, worse) pattern is likely to emerge if srd5aR2 is not being expressed.
Transcriptomic profiling in Silurana tropicalis testes exposed to finasteride.
Abstract
Investigations of endocrine disrupting chemicals found in aquatic ecosystems with estrogenic and androgenic modes of action have increased over the past two decades due to a surge of evidence of adverse effects in wildlife. Chemicals that disrupt androgen signalling and steroidogenesis can result in an imbalanced conversion of testosterone (T) into 17β-estradiol (E2) and other androgens such as 5α-dihydrotestosterone (5α-DHT). Therefore, a better understanding of how chemicals perturb these pathways is warranted. In this study, the brain, liver, and testes of Silurana tropicalis were exposed ex vivo to the human drug finasteride, a potent steroid 5α-reductase inhibitor and a model compound to study the inhibition of the conversion of T into 5α-DHT. These experiments were conducted (1) to determine organ specific changes in sex steroid production after treatment, and (2) to elucidate the transcriptomic response to finasteride in testicular tissue. Enzyme-linked immunosorbent assays were used to measure hormone levels in media following finasteride incubation for 6 h. Finasteride significantly increased T levels in the media of liver and testis tissue, but did not induce any changes in E2 and 5α-DHT production. Gene expression analysis was performed in frog testes and data revealed that finasteride treatment significantly altered 1,434 gene probes. Gene networks associated with male reproduction such as meiosis, hormone biosynthesis, sperm entry, gonadotropin releasing hormone were affected by finasteride exposure as well as other pathways such as oxysterol synthesis, apoptosis, and epigenetic regulation. For example, this study suggests that the mode of action by which finasteride induces cellular damage in testicular tissue as reported by others, is via oxidative stress in testes. This data also suggests that 5-reductase inhibition disrupts the expression of genes related to reproduction. It is proposed that androgen-disrupting chemicals may mediate their action via 5-reductases and that the effects of environmental pollutants are not limited to the androgen receptor signalling.
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