Well thats the thing, everything is kept secret and its tough to organize anything at all when half of what is actually going on is “behind the scenes” really doesn’t help motivate anyone. I bitched about this so many times even I am sick of saying it myself. I can say for a fact that I talk to three members who don’t post on this site actively anymore who still do have PFS but are just kind of fed up with how things are done here and are now just kind of going it alone so to speak.
I understand not being able to go into details. Hopefully Awor’s absence from posting here just means he’s been busy with other things. I think summer is a difficult time for alot not being able to do much while our friends and family enjoy the weather, holidays, etc. so maybe we all seem a bit more frustrated than usual.
Everyone can start their own PFS “fund” of course. Just put as much cash as you can aside. I’m sure there will come a day soon when you’ll be able to donate to a general fund for research.
Or you could start your own research project.
guys don’t lose hope.
i read promising fragments and rumors on the studies, i can’t say nothing but seems they r stepping in right direction
Can we know WHEN we are going to get an update? I mean, you don’t even have to tell us what it is… just when we might expect some information would be really nice…
They know that many people are at breaking point, and, as a corollary they’re loathe to offer up any news which might fall short of peoples’ expectations. Awor is under more pressure than Obama at the moment, and, he is not getting a semblance of the latter’s financial restitution, accolades (perhaps a moot point as it pertains to Obama); and, perhaps most worryingly of all, he isn’t getting to hang out with George Clooney and the like. Resolution, if it does come, will take time.
Well I for one have reasonable expectations. I do not expect a cure to be announced with this research, but it would be nice to hear something. Maybe just something that explains what happened to us to at least some extent would be huge news, even if it doesn’t “directly” lead to a cure it could at least get people looking in the right direction. And just for peace of mind, I would really love to know how it happened from the scientific perspective. Ex. Finasteride caused down regulation of genes regulating tissue specific enzyme production through lowered irreverable 5AR2 binding. Thats just an example, but some kind of reasonable explaination or provable theory behind what has happened to us would be huge. Or else we can go back to what we have done for the past several years (its the immune system, its the prostate, its fungus, its the liver, its the thyroid, its your diet, its your nervous system, its your gene’s… and so on).
Yes, BP, but the devil is in the details. I think they’re creeped out by the fact that their reporting of insubstantial findings (not being smart or disrespectful at all; they have only just set out) could cause deaths; and, although they are definitely not responsible for the outcome if it were to happen, it categorically looms large in their minds. It is obvious that Awor and Mew are not your average unconscionable types that are quite prevalent these days. I believe Awor said that what had been discovered thus far may only be another symptom or marker of PFS; and, that they have to go down this convoluted path to establish the aforementioned. In a word, by saying nothing, everyone here is forced to do nothing (restrained from possibly harming themselves).
If this is what you believe to be the case, I think you will see that holding people already on the edge this way can only be done for so long.
Don’t take this next statement the wrong way, but if you think people are really hinging on this… when instead of Awor playing up the whole thing like it was going to be the biggest break through in PFS ever (which really isn’t saying much when you have nothing to compare it to anyway) maybe he should have been more conservative and explain that perhaps it may not lead to anything at all instead of leading people along so strongly as so many other people seem to do on this site with their own other little pet ideas.
Even if the research had come to results that enables them to answer these questions, they wouldn’t say so here and now. I think awor has made it clear before that any substantial research result would be published with the study and not before.
There are good reasons for this. First, all research (especially if it has substantial results) needs to be cross-checked, peer-reviewed etc. to make sure that there are no mistakes. It would be highly embarassing for everyone involved and highly diametral to our cause if we would make bold claims based on that research that later are found to be untrue. So not making any premature claims is the right thing to do. Imagine, one day we finally have Merck in court and they are able to smear the credibility of our scientific claims, because at one earlier stage we had made premature claims that were found to be incorrect. Speaking of Merck, we want everything to happen behind closed doors to give them as few hints as possible about what is going on and what has been found out, so that they cannot try to shut down the research. And finally, let’s face it, there are scientist and scientific institutions involved that don’t help us with money, manpower and other resources, because we are such nice guys (most of us are frustrated and miserable thanks to fin). They do so, because they themselves have something to gain. And the currencies in science reputation and recognition. They want to protect (see above) their reputation, and increase it as well as their recognition. And if there are actually any significant or even breakthrough results they will be carefully walking the appropriate path by placing their study in a scientific journal.
So, the silence could mean alot of things. Awor seemed quite sure that they found at least “something”. So regardless of how substantial this finding is, I guess they are a) still doing research or b) going through all the steps to publsih their results. The last update was just 1.5 months ago, unfortuantely this is nothing in a process like this. I’m frustrated, too, but I think the silence simply means there is just nothing new to report for now.
If getting Merck in court is your biggest concern versus being cured, your better off than I am.
Oh PS: if Merck is found to be liable (which of course we all know they are), even if they have to pay out $100,000,000.00 it still won’t be enough to really hurt them overall. Realistically, they made a drug that caused people to die, and barely got scratched after everything was said and done. How sad do you think the court system is going to be for us considering that for the most part everyone only thinks that we have “only” sexual side effects, the severe depression, lack of motivation, and the phelthora of other side effects are almost never mentioned. Thats why we get so little attention, people think we are just some guys who have trouble getting our dicks up, they don’t realize this stuff fucks you up entirely; head to toe.
Sorry that you feel that way, but that’s no reason to put words in my mouth.
Feel what way? Like previous posters said, some people’s lives are in balance here, and your talking about the lawsuit, to hell with the lawsuit, its a damn class action, we’ll be lucky if we see a couple thousand dollars in 5 years.
Oh yeah, and this is coming from one of the first 9 people to sue them. Less than 2 months after coming off finasteride and getting the side effects, I already hopped onto a class action suit. Amazing some people have been aware of the problem for years and didn’t start lawsuits sooner.
I don’t appreciate your tone and I don’t appreciate you putting words in my mouth. I talked about alot of things. The fact that you single out the lawsuit is absurd in this context. To suggest that the lawsuit is more important to me than a cure is simply laughable. I’m German, there is no lawsuit here, and since I took Proscar off-lable as well as illegal generics from India, on Merck’s side there is no liability towards me whatsoever. And even if there were I don’t need any money, I have enough for my modest lifestyle. Getting back my emotions and my life cannot be measured in terms of money. So don’t say that shit ever again.
Hey,
I´m in mail contact with one oft he leading Prof. here in germany in CAIS, PAIS and 5AR deficiency S. He heard of the Problem and want to help us. He wants to discus that issue in his Labmeeting and also with some other expertrs. They do a lot of studys and they dont cost 1.000.000 of $. He may be finds a Student, who wants do write his Dr. work about it. Or in other case we can make a fund? I guess erervbody here send a lot of money for natural sup´s or drugs and many other things. So, why we dont collect money for a cure??? Why we dont dont make this more public? Many here can prove, that this drug did something with us. Even when not so many ppl are activ here, I think It would be easy for a Admin, to write a mail to all members. We all see, Merck still want to sell this drug. Ok, But when the publicity would be more aware of this. (nobody knows, who will be hit by this) If Merck itself will find a cure for this, they still can sell it. So if any of the Merck guys are reading here, think of this!
he should think about coordinating with the italians…
Yes, I told him about it. He is very interested. But how to get contact to awor?
What happend to his studdy? I read they dont have money for it anymore.
[i]“transcriptional activity normalized either after administration of supraphysiologic concentrations of endogenous androgens (e.g., testosterone or dihydrotestosterone, DHT), synthetic androgens (Mibolerone or R1881), or after treatment with frequent pulses (up to every four hours) of physiologic doses of DHT.”
“We hypothesized that AR point mutations localized in the ligand binding domain and associated with normal 3H-DHT Bmax and Kd may be reversible, and proved this by using the new AR HCA technology and conventional assays, such as NC-TDI”[/i]
That’s right, but you are lending further credence to what I said. It is clear that there is no disparity in what we believe. Something will happen and I am doubtful that a mob will form led by Bruce Willis to track Awor down. He doesn’t deserve that, and he isn’t culpable of some great crime here, as many like to imply. The only likely action will be people harming themselves.
Like I said, we both know that people are hinging on this - I know I am, and I don’t plan on waiting around for the next ten years. Again, as I said in my previous post Awor mentioned it would not be an easy road. So what is your bone of contention here: Awor was a little overzealous with some words? If you thought that what he said at any time meant guaranteed salvation, well then, you were a little naïve and overzealous yourself (I don’t intend to be rude). This entire mess is so catastrophic that most doctors don’t want to concede it is even possible.
On the matter of pet theories: Yes, I have been a proponent of the liver theory; everyone here has a theory whether they verbalize it or not. I recommended that people try some tonics, because it did give me some relief. I said that ATRA does store in the liver (and it does); I said there may be something similar at work with other lipophilic molecules, such as Finasteride. This may play a small role, but unlikely to be the root cause. I always thought the problem was with liver metabolism, and I thought the storage component was at work too, to some degree. My first post was not ideal; I was really taken aback at how severely dry Isotretinoin could make one, and I was fixated. I could be way off, but all I have done is offer people a suggestion, not salvation, from my layperson perspective.
I also said that the diuretic effect of Isotretinion and anti-androgens shouldn’t be dismissed as a loss of water from inside the cell when severe enough plays a part in cognitive dissonance, etc., if you consider that water is a cells most constitutive element (I had been reading: “ Your Body’s Many Cries For Water,” by Dr. Batmanghelidj. He was a gastroenterologist). I would lose 3 kilograms of water weight on a daily basis despite drinking copious amounts of water, and at the end of the day fatigue, shrinkage, brain fog, etc. was much worse almost undoubtedly due to cellular dehydration contributing to neurosteroid and neurogenesis inhibition. All of the above is much worse on Isotretinoin as evidenced by the all the deaths. People can’t even get through their courses and go crazy, let alone deal with any amplification brought on by a ‘crash.’
notworthit, please dont post moronic blocks of text in the one thread about an actual medical study. I pomise you nobody cares. Also, since you didnt even take Finasteride maybe you can take your bullshit ideas to a different website altogether?
You can private message him, Im pretty sure he speaks German.
I definitely went off on a tangent there, but I have to question you calling me a moron when you struggle to put a sentence together. You had the audacity to question 19 on his education, when it is clear your cognitive faculties were compromised from the outset of your life.