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.
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.
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.
In 10 years we are still here and waiting for treatment. Who develops the cure? Who? Merck? Another pharma player? Yeah, of course. Who will spend billions to get a cure approved by the FDA? In medicine you treat symptoms to earn money. A cure is not desired. And you all think the foundation will be able to develop it? AS long AS Merck makes money, there is nothing going on. If people stop buying M.s products, then a cure would come up fast. After the Vioxx scandale, M.still exists. They developed fin for a reason. And they have ultimate power. Yeah, Baylor is delayed again.
Delayed again? How do you know? Why, and for how long,?
When im honest i dont believe in a cure. We got fooled from merck and are fucked up for the rest of our lives. Im very young but i cant cope with that. i cant even read books because of the headaches. I always loved life. But its nothing anymore. Before i die i will burn up the german merck building.
If we are to ask ourselves what is the purpose of medical research there are many answers. To find ways to extend human life, to determine why we get sick are some reasons. Medical researchers themselves play a major role in all of this. They have chosen research for a career and to ensure their work benefits the health of people worldwide.
I believe our first major Foundation funded study conducted by Harvard failed in at least one of the purposes I have mentioned above. That failure rests with them. However Baylor’s attitude toward PFS research maybe entirely different and they want to ensure their work benefits the health of other people. Therefore we should not give up hope of a positive outcome.
Allegedly 21% of all prescription medication is ‘off label’ meaning it is prescribed to treat a different condition that it was originally designed for. Propecia itself is used to treat hairloss and an enlarged prostrate, both different conditions. So I don’t subscribe to this notion that the only way to cure PFS is via the creation of a new drug/treatment by a Pharmaceutical company. There may already be a drug(s) in circulation that could benefit us but without the Foundations studies we may never know.
I’ve read that over $160Billion is spent on biomedical research each year. Admittedly not all these studies prove useful but never the less it shows the interest in this research and the scope of investment that could benefit us in some way.
It’s understandable why we might put so much hope into the Baylor study and feel like it’s an all or nothing scenario. Perhaps when we know why we get sick then researchers can look for connections with other conditions. I expect this would provide the quickest path to finding a cure that utilizes current research and existing medication. Looking at the number of studies that have been posted on this forum it’s clear that the search for related conditions has already begun.
This was very well said, i do believe research can be beneficial to many people, for example i have severe eyesight issues from accutane, so im curious how visual snow research will help with the issues and vice versa with PFS research, there could be links to similar mechanisms, i know VS is meant to be caused by a hypermetabolism in a certain area of the brain, so it will be interesting to see. Also Ehlers Danlos syndrome got a 1 million dollar donation to fund research in regards to nutrition and gene expression, to see how much the condition can be treated by nutrition alone, since nutrition can have a big impact on gene expression itself, it’s very interesting to see, i say this because my elastic, thin, fragile skin resembles eds, but its not from a mutation of my genes so in theory it’d be easier to fix, but i do believe research over on that end could help me and a few others on this forum in regards to skin issues. As many people said, don’t underestimate the body’s ability to heal. Im very excited to see how the use of Crispr and other technologies could help repair the body and reduce signs of aging etc. Our situation may be bad, but what a time we live in now, a time where we have a very good chance to be back to a functional or better state.
What we need are results, helpful results. So far, we know very little. Few results. I do not believe in a cure by pharma. No way. You cannot make money with cures. No way. The foundation has not the money to develop anything. Period. AS soon AS people suicide themselves publicly with a gun and a poster “fin fucked my life, I am reayy to die”) there will be some progress, you can be sure. But who will do that? Being a hero?
Killing yourself doesn’t do anything, if I thought that’d help I’d be dead already due to my symthoms.
But shooting ourselves in the public eye does nothing, what does it do? It ends your life, once your out of the game, there’s no coming back, but if you stay and play, you may very well come out on top, what im trying to say is if all of us suddenly shot ourselves, what do the new suffers do? The same thing? No, the reason we are here is because nobody tried to do anything years ago, we are the ones who can actually make a difference and get out of this mess, once and for all. We all need to complain, we all need to be heard, eventually people will listen to us, you can only deny something so many times until too many people are complaining about the same thing, that you cannot deny.
Read carefully what I have written. We are not far from each other. The maingoal is to let lots of people know that fin can destroy your life. The Problem is, by just telling it you wont achieve nothing. They must be shocked. Lots of people around me knows of my pfs and wont ever take fin. No, there wont be a cure AS long AS there is no real pressure on the pharma. What could initiate such a pressure? A foundation, TV docs? Never ever.
I understand where your coming from but we cannot create that shock if we don’t know the underlying issues, once we know the issue, we can promote that in the media, get others on board etc. Companies seem to be denying this sort of stuff, but once we have hard evidence that they can’t deny, people will listen, documentaries, media coverage will be heard, but we cannot just do it once or twice, we need to be like fly’s, buzzing around being annoying, don’t ever stop complaining, people will eventually catch on.
Kinda a movement. It can be dangerous. Do not forget who owns the media and pharma. AS mentioned: power is very big. Of course not AS big AS TIME.
Unless every one of us sets up a monthly recurring donation to the foundation via paypal we will never cure PFS. We wont ever find out what happened to us. Nothing will happen, just like nothing happened for the last 15 years. Whether the foundation will be successful shouldnt even be part of the discussion. Even if its a long shot, every member has to chip in, even if its just 5 dollars/month.
When the study will be released?
I don’t think they’re holding it back deliberately.
So it seems that patience is once again, what we need.
5 years ago today the study was launched…How time flies…Bet a lot of folks here remember that time and being normal and having functioning life in society…Strange for me to look back on that time now…
Wow.
Did anyone here participate?
There used to be a few around here and on solve…I talked to one as he had the same similar side effects as me…The physical sides of massive weight and body changes…He said they told him during that they have no idea what is causing this…But who knows what they found out after the study…
I participated in the study. To have a doctor tell me PFS was real and this was not all in my head was worth it. I haven’t heard anything from Dr Khera about the study. He did prescribe Cialis which I still take. Once a year I email him asking for a refill. Maybe it won’t be too much longer until we hear something.