Baylor study delayed again

General Discussion
#163

The alternative: Throw everything at the wall and see what sticks. I’ve been booed for pointing out that homebrew hasn’t offered a solution yet after thousands of “trials” over more than a decade’s time because no one wants to face reality.

@MOONCHILD, what did you expect Dr. Khera to say; that they totally found the root cause, explain it to you completely, and suggest a treatment? Not sure if you understand how unprofessional and risky that would be.

Ps- not to say that they found the root cause, only to clarify how absurd it would be to expect a medical researcher to reveal the results of a study to a patient before publication.

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#164

No money = No research, the foundation have limited amount of money or no money, we don’t have money and many of us not even a job.
Research require substantial amount of money that we don’t have and in many cases end in hand of wrong greedy researcher.

#165

Yeah ok but what do we do instead?

Also it’s not right to say that in many cases end up in the hands of the “wrong greedy researcher”. Not every researcher is greedy, in fact, I’d say most aren’t. Because if money was what mattered to them more than anything, they’d probably pick a field besides academia. I do understand your concern though, but it’s just how life is, there will always be objectively shit people.

#166

I am talking about his ethical, of knowing the reason of my appointment previously, knowing that he can’t do anything an encouraging me to discuss at the visit.
To discuss what ? Or he was missing my money ?

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#167

I don’t know, but you have made your point a hundred times over that you are dissatisfied with your interaction with him and it is becoming redundant and unproductive. You are also doing so without his being present to defend himself. If you want to share your side of what happened in your member story or relevant category, go ahead. In any case you are attacking the character of one of the few people in a position to take action toward our benefit who has already spoken out about this condition in journal-published literature. It’s not going to continue.

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#168

I’m glad @Dubya_B posted, he has said it better than I would have.

Ultimately @MOONCHILD, yes you paid $250 to see a professor.
We’re all sorry you didn’t get the answers you expected (for multiple reasons) but that’s all you can really say. People going to see private doctors for an hour in the UK often pay more than than you did, let alone to see a cutting edge researcher who is, for obvious reasons, unlikely to reveal the details of their research for such a fee. An extremely busy man in his position probably (!) doesn’t have the time to reply to endless emails, so when he said “let’s discuss in the meeting” it was probably a fairly unsubtle code for “you get an hour of my time and that time isn’t now”.

It’s more your expectation that is at fault then his conduct in the meeting.

As @Dubya_B says, the magic formula of herbs, spices and over the counter remedies hadn’t been stumbled upon in the past decade, by all means everyone is free to do what they wish but to attempt to say that is a more valid use of our limited resources is obviously not helpful.

People who really want to advance our position have one really obvious thing they can do.

Post on this forum, be nice so people feel comfortable joining here, encourage others to complete the survey. If everyone got behind this plan of action, we would have a bigger community, more data and be harder to ignore.

The number of PFS cases is (I think) accepted to be underreported. If we can get it out of the shadows and have everyone affected stand up to be counted, we will be significantly harder to ignore and better placed to attract the attention of various organisations we need to get on our side.

Make no mistake, this is as big or bigger than YouTube videos and articles in magazines. Making this place an essential sign up for PFS patients is something everyone here could be a part of and it will cost nothing but time and a rejection of the inclination to be negative, post discouraging things or slander the very people working to help us.

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#169

CDnuts, English, Entropy, Swill (took part in a PFS study), Maxout777, CannonBalls, Coppersocks, Jimmyjonas, Rahaysa, PHBO, Jacknap and Damn. Also chi, who also took part in the original study, did similar and recovered.

Also countless stories on here of guys getting much better or recovering incorporating elements of it like meditation, clean eating, heavy weight lifting or HIIT and maybe doing so alongside hormonal treatments.

Not saying people shouldn’t support the Foundation, but this shouting down of any alternative in the here and now is not helpful and more importantly not truthful. This isn’t 2011 anymore when there was hardly any data of men getting better and people were desperately latching onto the odd user who did.

There is at times an overwhelming sense of doom and resignation among many users here which could be very damaging to new arrivals.

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#170

right here you said:

“Now whoever want to send a donation, can send a check directly to Khera at the end of the day he is the head of the study and he is going to receive that check with a big smile.”

once again. if we donate to foundation right now, does that mean its going to eventually go to khera?

you think you can be all sneaky and sly two faced etc LOL

whether its shaming people that are waiting for the research, or telling people that donating is useless, you got something against the efforts made by this message board.

and im not going to stop calling you out for it. every single post you make that shames people or tells people that donating is a waste, im going to be right there calling you out like it is, until the mods prevent me

#171

No an hour, less than 10 minutes visit.

#172

You are aware that there are different severities to this yes? Some people are affected such that they can’t tolerate a workout without all their symptoms going from livable but not great to a complete crash. Similar case with supplements/hormones/diet changes.

There was a user on solve who got much much worse permanently after stable symptoms for a number of years from eating asparagus for a month. He logged in periodically to update us about his deterioration and expressed suicidal intentions before eventually disappearing completely.

No one’s saying there’s absolutely nothing anyone here can do about their symptoms. But there’s currently nothing that appears to work for everyone.

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Update: still completely recovered, raging libido for the last four years
#173

I like the badges idea… would there be a badge for Survey, 23andme, and member story… all separate?

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#174

Besides the point. I understand your situation but just take a minute to consider you’re accusing someone of being in the wrong ethically without having a reason to do so (I’m referring to all this talk about stuff ending up in the hands of the “wrong greedy researcher” when he could well be doing good work into our cause. He’s also acknowledged that evidence strongly points towards PFS existing in a study published this/last year), and it’s wrong to slander without evidence. And one visit where he supposedly wasted your time and money is not enough to draw conclusions about his character. Have you ever considered the possibility that maybe he considered his findings something you wouldn’t be able to understand because you don’t really understand how genetics or epigenetics work? Have you considered that he didn’t share them with you because he didn’t find you trustworthy and didn’t want to risk compromising the publication? Have you considered any of the infinite reasons he could’ve had to not share that information with you? Why would you choose to believe that he’s the bad guy in this picture? Things aren’t as black and white as you imagine them to be, and we’d best hope he’s not everything you say he is because that’d just mean we’d have to continue experimenting with the infinite permutations and combinations of supplements and lifestyle changes that’ve so far, had a pretty shitty track record of getting people back to normal.

We need research. Not every single person who’s ever registered on this forum, but everyone who’s been in this boat for a while and hasn’t been cured with time.

In the meanwhile whoever’s in a position to experiment can do so, it doesn’t have to be an either or situation, but even for those who’d rather experiment, studies could provide data that allow for a more informed approach, and that should lead to better outcomes.

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#175

Something like that, yes. All on the backburner right now though.

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#176

I also wonder if there is any way the whole site could be changed in name to include Accutane and PSSD sufferers. I’m not a web developer so I don’t know what that would involve, and how things like the current “propecia” containing url would be dealt with, but it seems anything that can be done to unify causes and bring more sufferers into the fold might be invaluable for getting to a new level of progress.

#177

There is evidence.

The house is burning. People inside are dying. The person with the fire hose, knowing full well he is the only person with the hose, is sitting outside for 6 years doing nothing.

In 6 years more than a 100k people have gotten PFS (that’s based on my estimate that there is a total of 500k people with PFS only from finasteride.) Many thousands of those have died. The others are hanging by a thread, living day by day.

This is an emergency and yet the researcher who potentially holds the key to ending this crisis has absolutely no sense of urgency. I do not know what level of denial one needs to have to try to justify this with the nature of the research process, complexity of the task and so on. Would he have taken 6 years if he or his son had PFS?

I agree that there is little point in continuing this debate. The truth is obvious to anyone who wants to see it. The question is what do we do next.

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#178

30 more posts but still nothing is published. can we pls stop posting here till this study gets published?

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#179

Why? why stop posting about it???.this is all some have and discussing is healthy for those wether you agree with them or not everyone has a right to discuss this openly…

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#180

We should have written a letter to the lead researcher of both studies explaining our story. It would have provided a human element. Our suffering would have made difficult reading, it’s our greatest opportunity to appeal to their conscience.

We could all write our story. We could even send these to specific people like editors, documentary filmmakers, medical people and so on. It might get more people with influence talking about PFS.

We could have a new website titled our story or a section here. Then we can post the link onto various forums etc. People can see what our life was like and how PFS changed it.

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#181

It shows that there is something deeply wrong with the entire university medical research / peer review / baby steps in order to hopefully pass peer review process. At the end of this you might have a lot of studies adding up to exactly nothing.

I think the entire process lacks any business like urgency. No normal business would sit on their ass for 6 years. Its ridiculous. Nobody can convince me that the study necessitates a 6 year long ordeal.

What a joke. Its enlightening to say the least.

That doesnt mean we should stop donating, however the process of how and who we fund might need to be tweaked. Maybe awor has ideas regarding this, he hinted at the problem in an earlier post.

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#182

Great idea/suggestion ac3c

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