Researchers must be independent. You would need to do it in the dark and pay Thema privately. AS soon AS it goes public, they are surveilled. Forget that. Crispr the same, no development auf going public. No pharma will allow developing a cure against lets say Depression or ED. Man, how would they still make money if nobody needs vigagra and Co.? How? No, crispr will be surveilled, AS well. Imagine, someone says curing cancer with crispr. No way, he Wilk ve kilked. Cancer is a huge and important market. Sorry man, it is naive to think that there are independent researchers. There were! holistic docs treating c⌠Unfortunately died. Forget waiting for a cure.
As mentioned many times here, the cure most likely will come from CRISPR, in which case as long as we know what we need to target, should work brilliantly. This is something that will come from research, and once the technology catches up, weâre good.
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Im hoping this could even revert my skin issues, by increasing collagen production etc or lengthening telomeres, revese aging since mine is premature. Its very interesting what they are doing and what could be possible.
Cancer is extremely hard to cure as its adaptive, it can become immune to treatments etc, no cancer is really the same, there is stuff being looked at that could potentially keep it at bay or cure it per say. A cure for cancer would be worth billions, imagine how much they could charge for it? People would get their insurance to pay for it but it would be a massive industry. Independent teams, even in china would sell these cures, you canât hide this stuff as i said, people will always copy or try make a better version of something, a lot of diseases have actually been cured, itâs just such things are very hard to do, but with Crispr, the game is going to change and big pharmas will need to adapt. When the new kid comes on the block, eveyone will need to change their tactics. Industrial competition is only beneficial for the consumer.
Cancer is curable, but those ways /paths are not allowed to go public like making ads for that. Read carefully what I have written. Crispr researchers wont ever develop cures for our symptoms. Pharma will stopp them. It must be approved in some countries anyway. No Chance.
Well if Crispr comes up with anti aging reversals, which is very likely that it will, the whole billion dollar industry of anti aging creams etc are gone. They canât stop that from happening, i get you think they wonât allow it but itâd be hard to stop, if itâs proven safe they cannot stop it. People will do it off label regardless if its not âapprovedâ. The anti aging industry will change as a whole, itâd become something new.
I donât think theyâd try stop a cure for our symthoms, they wouldnât be able to if itâs shown to work, what could they possibly say? I just donât think people are trying to hinder stuff, thats just my opinion.
We would need to go to a private lab, making our own studies on 20-30 people. Getting the root and so on. But not go public with this. Dangerous.
Didnât Merck create a vaccine that prevented women from getting cervical cancer? I know companies want to make money as theyâre a business, but keeping patients alive would certainly create more money, thereâs a lot of pharmaceutical conspiracies out there and me being hopefull Iâd like to think companies do want to research cures. I donât believe eveyone is all bad, im just curious if Merck did create such a vaccine, why wonât you they help fix the mess finasteride caused? What was their answer to post finasteride syndrome Iâm interested to know what they said? Surely post finasteride syndrome is very bad press for them, or at least it will be soon enough, surely their best interest would be to donate some money to help out, from a PR point itâd look very good, if they try to hide this and keep it down low, how does that look for them as a company? Merck silencing victims injured by drug! I donât see how thatâd be good for them, same with Roche, surely theyâd want this fixed too no?
Considering that close IRL acquaintances made me aware of someone who developed this problem from Accutane and someone else who developed this problem from an SSRI, makes it hard to believe this isnât more of a 1 in a hundred or, at least 1 in a thousand medical condition, more-so than 1 in a million.
Truly believe those who say we are only seeing the tip of the iceberg discussing this online and a small icicle actually reporting it to regulatory bodies.
If a therapeutic target is found, there are countries where different ethics apply and where tech like CRISPR can be applied more liberally. Itâs a shame that it might have to come to that. Some of the organizations (looking at you FDA) who allowed this to happen to us will try to deny us an available treatment because âethicsâ.
I donât understand why they wouldnât allow treatment? Why would they deny us such therapeutics if it where proven safe?
Money. Thatâs why. When you donât have the money to fund years of repeated clinical trials for a specific treatment for a specific medical condition, you canât get FDA approval and have to go to back-alley doctors or fly to far-off countries to be treated.
Almost forgot about having money to buy independent research.
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Already in this forum we are seeing a pretty big variation in how badly people are affected. It probably is safe to assume that many people have âPFSâ even milder than the mildest cases we are seeing here, and perhaps attribute it to something else (stress, age, etc.). Then you have the vast majority of doctors who have no clue about these persistent side effects, and will inevitably misdiagnose patients seeing them about their complaints. Lastly, most will know from their own experience that it does take some internet research skills to find the relevant information sources, like this forum.
Taken together, I would fully agree with your statement, because I believe that there are many cases out there who have no clue whatâs going on with them.
PS: We need to come up with a term for âPFSâ which is not drug specific, maybe something like PADS (Post Androgen Deprivation Syndrome)
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Absolutely! It does make one wonder how many cases of this are attributed to âpsychogenicâ origins. Without physical symptoms, one could easily be convinced of this because of a combination of depression and ED, and this seems to be the most commonly used catch-all diagnosis by doctors who hear of these types of complaints occurring together in the absence of very low hormone levels.
The âpost-Accutaneâ case mentioned did sound like a very mild case and probably doesnât know to this day. I am no longer on good enough terms with the person who informed me of his problem to get into contact with them, and it would be too awkward of a situation since they confided in me of his problem. The sensitive nature is another hurdle of spreading awareness to those affected.
Agree in regards to âPADSâ as a more comprehensive, but still technically accurate, reference to PFS, but I think this needs more discussion on when and what the impact of doing this may be.
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Eh, I donât think anyone will care about flying to another country.
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Iâve got my passport ready.
In reference to aworâs suggestion to start using the term PADS⌠How does using âPADS/PFSâ sound until they are easily recognized as one in the same?
btw- Hi borax!
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PADS sounds not right. Fin fucked us and was developped by M. Thats the fact. We dont need any distraction from that. PSSD, POIS, PAS⌠do not have their root in deprivation of androgens. So, pfs is the right expression. And once again: M.do not admit pfs is existent. Bum, thats it. End of story. They give a shit about US, you have to know. A shit. They even might think about US how stupid we were or are. They will do it AS long AS they make money with that. Periode. You can wait until your death - no cure will occur. Thats the point. And unfortunately, we know it, feel it. The foundation is good for psychological support.
Noprop, your meltdown is not helping. I understand you may be in a bad moment. Many of us have been there. But this is not productive. I donât care about Merck. I care about getting better. Maybe we wonât ever get better. But we donât know yet. There is still so much we have to do and can do in terms of research. Letâs focus on that. Then maybe we get lucky and find treatment or a cure, or maybe we hit a dead-end that we cannot overcome. We donât know. But letâs find out first, before we give up. Iâd rather go down with a fight and the knowledge that we tried our best, then give up like that.
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Saying âend of storyâ, âno questionâ, âwe know itâ doesnât actually make it the end of the story, unquestionable or something we know. I donât agree with any of that except the statement merck developed finasteride. All those drugs, along with leuprorelin, dutasteride and the fruit of the saw palmetto plant (I somehow doubt grew in a conspiracy to destroy a tiny amount of men - perhaps Iâm wrong) sharply reduce intracellularly available active androgens. I am not aware of another significant similar pharmacological property between these substances. You posted in another topic:
We do have helpful results. Most importantly immunohistochemistry has proven a persistent and significant overexpression of the androgen receptor, so something important is happening in the androgen pathway - something nearly every cell line depends on - and is causing a range of systemic effects that vary quite wildly in severity and tissue specificity between sufferers. This has led to more detailed investigation, through which Iâm hopeful weâll soon learn more of what is happening and have a clearer route to follow. If youâre not interested nor hopeful of any progress, Iâm curious as to why youâre making a lot of posts filled with negativity regarding the hard work of others alongside saying we need helpful results. Suggesting it is heroic that people publicly commit suicide is certainly a deeply irresponsible thing to be posting; some here are in a very serious and fragile condition. It would not be heroic. It would be completely strategically useless and another tragedy, so please donât post such things again.
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Iâd support changing the name to PADS, and anything that helps tie in all the people that have been affected by this is a good thing.
I donât know about other people but even if I had to take a drug like Sage 217 for the rest of my life to have improvements Iâd be ok with that.
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Easiest choice ever (if safe). Afterall, I was ready to take a pill everyday to combat hairloss. Iâd to worse things to get my life back.
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