Couple of weeks typically means 2 weeks. Buts its obviously a guess (after all he “expects” that to happen, its not a guarantee) so it could also be 3, 4 or 5 weeks, especially given the “corona” situation.
I didn’t say Baylor should be ignored when it arrives, of course. That would be insane. I meant sitting here with our thumbs up asses not bothering to get other research started for the last 7 years was stupid. To continue to still do that even today would be insane. In a way we do. Still very few survey respondents. The focus of everyone here should be on finding every way possible to get more research going. Instead, you more often hear “Anyone heard the latest on Baylor? Best just to wait on Baylor. I heard it’s coming out any week now.”
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Yes that’s why everyone should kindly ask and remind folks here and on other platforms to eventually take the survey. This isn’t a mods only task and I’m glad that some forum members here are already reaching out
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The real disappointment isn’t that Baylors not been published, the real disappointment is that no other external research on epigenetics has been started. That’s 7 years of nothing which has eaten away at our hope and belief that we will find a cause.
This is why these Baylor threads descend into frustration and anger because there is only so much people can take and everyone has a breaking point.
We are a community in pain. Let’s try to remember that the next time we turn on someone for being upset that nothings been published. We are not robots we are human beings and our reactions are very human.
If you want to be part of the next major study, show you care, and make a contribution then if you haven’t already please complete the survey.
If you can’t be bothered to do the survey then why be part of this community. You walk amongst us but not with us.
I cannot stop the non survey takers from coming here but I will stop helping them as they choose not to help us.
#nosurveynohelp
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This is how I see it.
How about it, non survey takers?
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2 weeks have now passed.
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I’d like to emphasize what others have said regarding “a couple of weeks” not meaning “within 2 weeks”. It means sometime in the next few weeks, so that could 2 weeks or 6 weeks or 8 weeks, etc.
I suggest to everyone on here to stop waiting on this study. If you’ve fixated yourself on these results coming out you’re already setting yourself up for disappointment and are putting extra anxiety & anticipation on your already taxed mental system.
Taking the survey was the first thing when I signed up. However, can someone explain the connection to scientific research?
I understand we’re trying to show, across a large number of people, a common factor of suffering from similar symptoms. However, I’m not aware if this is feeding already into the ongoing Baylor study or if we plan to use this as evidence to convince the medical community of the reality of this condition?
And I totally agree that our number one priority should be to get as many research papers published as possible. From what I understand, even a smaller scale study like Melcangi offers us much greater insight to what is going on with our bodies. Considering this condition has such a varying pattern of behavior from person to person, and displays various systematic symtpoms, it’s highly unlikely that a single theory or a study will give us the comprehensive understanding we need.
Well if we want to approach scientists to discuss research, we need to show them that this is a multisystemic condition, affecting people heterogeneously, so that if and when they choose to research it, they get the full picture of the condition, rather than focusing on only certain aspects of the condition.
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The connection is that dicking around with googling pills and herbs for the last 15 years has accomplished fuck all except making many guys worse. We need to seed research.
Once research has been performed, then PFS/PAS/PSSD will be considered real according to people that matter rather than people crying to each other on the internet.
Once it is real, a therapy will be developed. Until we get more Accutane and PSSD survey respondents, no research will be performed and no cure. The clock is ticking on us all to get a cure before the sexual and mating phase of our lives has elapsed. Therefore, the OVERWHELMING focus of this forum should be on recruiting more Accutane and PSSD survey respondents.
Every day that we fail to get as many respondents as we could is another day that we have this disease. We will never recover from this disease until the survey gets filled out by a lot more people.
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If it looks like a duck, swims like a duck, and quacks like a duck, then it probably is a duck.
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Guys, the real take away here is if you want to do something, you have to do it yourself. If you can’t do it entirely by yourself, you’re going to have to cooperate with others to do it with you. There are plenty of members here who may be interested in what you want to do if you have a good idea. But whatever you do, don’t just say you have an idea and that you think somebody should do it. You have to be willing to put in the sweat equity and contribute whatever you can, even if its not that much. Otherwise people won’t even think about your idea because you don’t even care enough to put in any effort.
If that’s not possible, and for some here that may be the case, you’ll have to accept the new reality and find a way to cope with your life. That is another huge endeavor, but it is worth pursuing. This horribly sucks but this is our reality, at least for now, and I promise you that denying it causes you more harm than simply accepting it.
By tying your well being to this Baylor study or the forum survey or anything else, you are giving control of your life to people who don’t even know who you are. A lot of hard work went into this study and it is totally disappointing that it has taken so long to get published, but in the mean time you should have been taking responsibility for your own life and figuring out how to make the most of it. It just isn’t healthy your happiness to be dependent on the outcome of a study you don’t control whatsoever.
I know this message will feel bad, but it is tough love, because I want you to live the best lives that you possibly can. I’ve been living with this condition for over a decade and I have made peace with it to the best of my ability right now. It is absolutely true that this has limited my life in many ways, but why should I let that stop me from doing my best to enjoy what I can.
I had to say this because for many years so many members have been complaining that the study is taking too long, or that Khera has been corrupted by Merck, or speculating about the research being disappointing, and not only is it a waste of time but it is actually harmful to you.
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Actually when I read this and see that this person is American and he writes a couple of weeks , that means 100% of the time 2 weeks.
This is day 1, whoever is responsible, not saying I’m blaming the OP or the Doc but someone is, for letting down a bunch of dudes who are sick again.
Can we embrace a “no Baylor topics until it’s released” policy? Are these little rollercoaster topics helpful to anyone?
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What might be more useful is a thread that recorded the amount of times we were told Baylor will be completed this week, this month, this year etc. If we had this people could see for themselves the number of false dawns that have occurred over Baylor.
I’ve chalked up about a dozen times we’ve been told Baylor will be completed by such a date etc. Therefore I no longer believe MKs Baylor completion comments. It’s like how many times do I need to be treated like a mushroom before I realise I don’t want to be the mushroom anymore.
Its clear than human behavior towards Baylor has not changed unless its trained in another way. These Baylor threads are emotional punchbags. Take the thread away and people will still feel angry or frustrated inside. People need a new hope to direct their energy towards. The new hope should be the survey.
We should now be encouraging people to take the survey and no longer leave this to mods etc.
This should become a new culture. Anyone who has been here over 3 months with persistent issues I assume should be completing the survey.
Typically these guys come here occasionally when they have a worry. They post that worry on the forum and expect the community to give them an answer because they are too busy with their own lives to find it on the forum. The person gets their answer from the worker bees then goes back to their life. Going the gym, dating girls, drinks with the guys, chasing promotion at work etc. So the mindset is I’m OK Jack I don’t need to fill in the survey, life ain’t really that bad. However when I wake up one morning without morning wood or feel off due to eating something different you can bet your last dollar I’m coming to this forum looking for answers. You can bet I will impart my worries on you and say how awful life is today without my morning boner.
One of the guys on Greeks survey list started a thread on their condition that has over 200 replies. Now they are feeling better they rarely come here and can’t be bothered to repay all the people who helped them by doing the survey. This is the type of selfish people that we are dealing with. When I’m sick it’s everyone’s problem, when I’m doing fine see you later guys. I don’t subscribe to the idea that a person went through a tough time so that’s the reason they don’t come back here and do the survey. That’s selfish thinking.
I’ve stopped helping those who have been here for more than 3 months and can’t be bothered to do the survey. Yet when they are unwell they expect others to answer their worries. We could fill our qouta of PFS survey participants in a month if these people helped out. Instead of discussing Baylor let’s all turn our attention to getting the survey completed. We need to stir the ship in another direction. These Baylor threads keep us in the dark fed on BS like mushrooms unless something positive comes out of them.
Baylor is a turd no matter how you try to polish it. It’s a turd we cannot control. We can however exert control over the survey and in doing so help to fuel the next piece of research. As corney as it sounds that can be our new hope.
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I wholeheartedly agree. In my opinion it’s rather impertinent to expect help without contributing to the common cause and thus hindering the potential bettering of all of us. So everyone please kindly remind all those that haven’t taken the survey to do so.
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Your own quote says “two or a few things that are similar or the same”. I’m not sure how you interpret that as just two.
Dictionary.com which is American English also confirms this point and defines it as “a couple of, more than two, but not many, of; a small number of; a few”
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In the English language a couple means two or a pair. In your example you suggest a couple could mean 6 or 8 to fit your own narrative.
If you are hanging out with a couple of friends, you are hanging out with two friends. A couple is a pair or a twosome. As a verb, couple means “to pair or match.”
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You did it again, literally on the same the second definition is “a small indefinite number”. Some people use it to precisely mean two, but not everybody. Dammit.
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I just ran across this thread. It intrigued me because the name that is on the study. I literally was just trying to get this guys email yesterday so I could ask him some questions. I found what I’m guessing is his secretary’s email address and I emailed her and asked,
“Hey Sharon, I was just curious as to whether Mohit Khera, MD is still involved in the study of Post Finasteride Syndrome and if so would it be possible for me to get his email address?”
Her response was, “HI J___e, That study is closed. Thx, Sharon”
I’m not sure what I believe anymore. Hopefully it just closed and they’re waiting to release the results. Maybe that was what she was talking about.
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Yes, but he qualified his statment by saying that he “expects” it will happen. Which means that he could be wrong or it could take longer. Otherwise he would have said: “it will be published in a couple of weeks”.
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