Discussion thread regarding improvement of Propeciahelp.com

General Discussion
#21

Excellent observation. It really develops into a cult, where a false prophet makes absurd claims and no rational discussion is allowed. I had this problem with numerous people but especially bizzbee. If you point out the fact that the success rate of treatments is very poor to non existant, they always come back to the supposed fact that it works for them due to their extraordinary effort. If I can beat this why cant it work for other people? And arent you just keeping them from salvation? Wouldnt you already be cured if you had the wherewithal necessary to complete my protocol? The only reason this scam can continue is because the condition hasnt been explored yet. Nobody would have the gall to speak to a cancer patient in the tone that some gurus on this and other website speak to sceptics. Sadly the sheer desperation of fellow members feeds this phenomenon. It is no wonder that in such an environment the work of the foundation is ignored, as acknowledging it would imply that the protocol espoused by the cult leader might not bear fruits. This thought is too painful to contemplate for some.

I have no problem with homebrew and exchange of ideas, as long as it doesnt degrade into a sick cult, like described perfectly below.

#22

I will keep my response as short as possible and to the point. This forum divided it self and forced most of its involved members to go to other forums such as solve PFS , swole source and the ray peat forum. It did this by attacking people who do what this forum negatively labeled as “homebrew”.

The constant fighting from members who hated people like justquitdut simply for using their own resources while attempting to find the underlying mechanism. Mew would only step it once it got completely out of hand and would side with the “lets just focus on the studies group”. This is what created the “studies group” vs “home brew” group. The “VS” is what created the divide and we had no choice but to take our efforts to new forums.

The right answer is clear. It’s a combination of both. Studies and home brew. Not one or the other like people on this forum want it to be. It’s not that easy. With PFS its never that easy.

A group of us on another forum may be onto something that has potential. It centers around what Awor mentioned about 5ARI’s (finasteride, saw palmetto, dutasteride)13-cis-retinoic acid (Accutande, etc.)Various AntidepressantsGnRH Analogs (Lupron, etc.) having a possible related common molecular mechanism.

We are currently running our own trials with a drug that has the potential to correct it. It may be something or like many other times it may be nothing. But the point is we are trying new things while waiting on more studies to be published. That’s how the site went wrong. The mods should have never of let that happen. It was an easy fix. All we needed was someone to step in and say “you go over here” and wait on/support the studies and “you go over their” and risk life and limb doing experiments. Like Awor mentioned this would have kept us TOGETHER all on one forum and our cause at the strongest level it can be.

In other words finding the true mechanism takes the establishment/time and “ginny pigs” that experiment. Yes it’s risky. Yes it’s dangerous. Take the guy that got way worse after experimenting with Armidex for example. He got way worse from inhibiting estrogen. He’s a warrior. His story makes me sad. When I get ready to take new risks like I’m about to do soon with the drug we are trying I think of that dude and it’s a scary reminder of the risk I am about to take. But I also understand that it’s necessary and taking these risks is required to find the underlying mechanism.

I believe that my trial and error we will find the mechanism before the researchers do simply because we are moving faster than they are. Of course this approach has it’s risks and maybe I’ll end up as a falling warrior for the cause or maybe I’ll be a part of uncovering the true cause. Either way regardless of the result it will be worth it.

My point will be proven right now as soon as people chime in attacking me. Watch…

or maybe they won’t and this could be the beginning of turning this forum around

#23

Thanks for your observations axolotl and pvdl.

Bizzbee made a post yesterday in this thread, which was very hostile towards both pvdl and me (I deleted it). He specifically implied that my lack of recovery was my own fault. Having been away from this place for a while now, I was a little shocked about the tone of his post. Not having read this forum in a long time, I honestly have no idea how widespread such hostility is. Based on what axolotl wrote and pvdl’s comment’s, I fear that Bizzbee is not just an edge case. I had a brief pm exchange with him in the hope that he would enlighten me about where this whole anger is coming from, but he chose not to enter on the discussion.

All the Potentials in my summary further above are mostly clear to me and understood. However, this “community feeling” issue we are touching on now, needs to be explored further. Now there appears to be a group of individuals on this board which seem to appreciate a civilized level of discussion, and I must add, despite having PFS. Then there appears to be group which are very angry about something and vent this anger by attacking other PFS patients. Again, sorry about the possible naiveness of my questions, I am really out of the picture here after being away for so long.

What are these people angry about? Of course, one can certainly be angry or even scared about having PFS. I am too. But directing this anger towards others in the same boat seems a little weird, and cannot be the explanation from my point of view.

One possibility is that some of these people genuinely managed to feel better at some point for whatever reason. Maybe it was their therapy that helped, maybe it was just natural recovery that happened while applying some regime. Are they now feeling that they are not being taken seriously by others? Is that frustrating them, causing them to become hostile? Or are those guys hoping to on-board more people on to their regime, in the hope that more “consumers” will help them “work out the kinks”, which are holding them back from 100% recovery? Maybe if that is the case, then rejection from “sceptics” is a threat to their own recovery process, leading to hostility?

Does anyone have a take on this? It wold be especially great if someone with a background in psychology could comment on this phenomenon of hostility around here? Even greater would be, if one of the “hostile” guys (Bizbee for example) could join this thread and give us some insight why they are behaving in the way they are?

I think understanding this subject, and how to improve the community, is key in moving forward. At the end of the day we as a community need to define what our values are. For example, criticising ideas is ok, attacking people is not. We need to define the guidelines for discussion in this place. This must also include that we refrain from discrediting the therapy attempts and recovery process of others (including associated theories). I feel, everyone should have the right to have clever ideas around here. Once we have a good set of values we want to uphold in this forum, we can then translate these into guidelines that enforce them. I would want every group to contribute to these values, including the “angry” guys. The acceptance test of a good value system will be if people are not angry and feeling hostile/alienated anymore.

This is then where software comes back into play. Discourse, the package I am proposing, is fantastic for this (I am using it in other contexts). With Discourse, users below a certain ranking are always reminded of the posting guidelines while posting. If the user then chooses to violate the community guidelines, the community will flag his offensive post. If the user then repeatedly disrespects the community guidelines, he will be blocked and eventually banned from the site.

The kind of problem we are facing here is common to all online discussion communities. Modern day software like Discourse puts finely tuned mechanisms into place, which help a community live by its values. This is why Discourse calls themselves the software for “Civilized discussions”.

What we need to do now is define our values. My hunch is, if we all respect each other more, even if we don’t agree with what others are posting, we will end up with a more civilized level of discussion, than what we are having now.

Thoughts on reasons for hostility or a proposal for values?

PS: Many thanks for your contribution “5 alpha victim”. I had already finished writing my post when you posted yours (that’s why “PS”), and probably would have written it a little different now. But I chose to leave it as is, so you can understand where I am coming from. Nobody will attack you. Your post has greatly helped me to understand some of the questions I asked above. It seems to confirm my thinking. If I understand you correctly, this whole community mess basically boils down to a battle between the “homebrewers” and “science is the only way” factions. And btw, I don’t mean “homebrew” negatively. If you have a better word for this community driven discovery process, I am glad to use it instead. Both camps have alienated each other by lacking respect for the other’s point of view. Is this correct?

#24

Awor, I hate to say it but SolvePFS.com is a much better site at this point. There are more active users and people who actually have scientific (somewhat) minds who haven’t given up up theories and experiments. Sure, these homebrew theories and experiments may never find a total cure, but they have moved people like myself from say 20% to 80% in certain symptoms. Meanwhile these people are still donating towards the Foundation, check out the thread where people are lining up to to earmark their donations towards Dr. Melcangi’s research.

The culture here was terrible, we were basically labeled a terrorist for expressing your experiments, little things that made you slightly better, thoughts you had. Mew was at the top of it. You were gone mostly, but also against homebrew. People like Oscar ran around trolling and derailing every thread. I appreciate everything you have done with the Foundation and research initiatives. Your efforts single handedly might lead to a treatment and save the lives of thousands of men. However, many many years later and their is still no pudding. People can’t be patient in the time of a decade when they are fighting to keep their life daily. Best of luck here. I hope things can get back to how they used to be.

#25

Hey moonman

Good to hear that you have substantially improved in some areas. Believe me, I wish I could do so too. I understand that SolvePFS is considered by some to be a better site at the moment. For myself, I cannot judge it because I have no access. I am not concerned about ph.com vs. SolvePFS. We have had enough “versus” around here it seems. I am more concerned about the bigger picture in the sense of PFS as a community, with a strong need for visibility. The real problem here is that SolvePFS is a closed site. This represents a serious misjudgement on the behalf of Eden or whoever is running that place. Closed sites are not indexed by search engines, and PFS is losing visibility in the Internet rapidly because of this. The more people move over to SolvePFS, the more this will damage our cause in terms of visibility. It cannot be overstated how catastrophic this is for our cause. I hope I don’t need to remind anyone that much of the initial and ongoing public interest regarding PFS was due to the open nature of Propeciahelp.com. Scientists, Journalists and other people of influence could see what is going on.

Propeciahelp used to be highly ranked in the past. A search for “Propecia side effects” used to rank propeciahelp.com in the first few hits. That was fantastic and a good reason to why PFS got be quite known. Today, we are nowhere anymore.

Regarding culture and homebrew: I think I understand the culture problem now, but would like to hear a little more from “5 alpha victim”. As to “homebrew”, yes, I was against it. I see it differently now, in the sense that it fulfils a vital patient need and can be synergistic with the scientific process if properly managed. The reason I was against homebrew is because we had just started going with research at the Foundation back then, and had a substantial roadmap of thing which needed to be investigated (which I had outlined on this site a few years ago, btw). On the other side, financial resources were dearly needed. As I said before, if each patient had just donated $100, we would be much further today than we are now. Everyone was focused on saving their own bacon, and so the millions were pouring into “homebrew” therapies with questionable results. Meanwhile, if we had a better understanding of the problem we are dealing with, “homebrew” would also be much more effective, because we would know what to focus on.

It takes both, that is why these two camps (homebrew and science) must get back together again, in one place, which is visible to all.

#26

Awor - my complements to you for coming back, reaching out and seeking input for improvements in both PH the site and in PH the community.

This site really pulled me through during the first year+ following my crash 5 years ago. Given, I had no idea what the hell was happening with my body post-crash, PH gave me some understanding of my own situation, as well as insight from many others that were in a similar boat. Like others, I found the sense of community support to be one of the greatest attributes of this site. However, the level of member-to-member support has been on the decline over the last couple of years.

While others expressed the appearance and functionality as their main issues with the site, my main reason for being less engaged on PH is that I feel I have reached a steady state or PFS baseline. I’m simply not getting any better, or any worse for that matter. And since the site is less about community and support these days, I haven’t been motivated to do much more than check in from time to time.

Hopefully, this thread and the exchange of ideas it yields results in getting all PFS sufferers back on the same page and closer to our primary goal of healing.

#27

I completely agree with what you’ve said here awor. It goes without saying if I can help you in any way please let me know. I hope you also see the need for continued engagement from people like yourself though and hope that you will not completely lose interest after. I’m also screwed up to the point my life is essentially over - I’ve lost my work, relationships, physical functionality and connection to the world. I will help in any way I can. We can’t just let this problem be swept aside. Perhaps with the results we are anticipating, the reboot of this site will come at the right time for a good PR effort.

And in regard to what you said about that attitude being an edge case, it absolutely isn’t. I’ve sadly seen it a lot. It’s a real problem in my opinion. I can’t think of a solution in the blind state the world is still in regarding what PFS is, but I will give some thought to how bridging this divide could be achieved against the backdrop of a certain ethos relying on it.

#28

Thanks so much for your posts Awor, I agree with everything you say.

I really hope that Mew realises that we are very grateful he set up this site, and for all his hard work in doing so. But all things like this need overhauls if they are not be become obsolete, and I think your proposals for upgrading this site are spot on.

Thanks,

Davey

#29

Thanks again to everyone for your participation in this important thread. I just had a positive conversation with Mew, and I believe we are on the same page regarding most issues. We will now put some thought into the details for a relaunch, and Mew will also thoroughly review your feedback. Hopefully even more users will contribute to this thread in the meantime. I will be checking for new posts regularly.

Also thanks to all the people who either offered their help in this thread or via pm. We will get back to you once we have worked out exactly how we are going to proceed. This will take a moment. As soon as Mew and I have decided on the next steps and time frame, we will post an update here.

#30

What I found best about ph.com was that it helped me find a PFS Doctor who I would never of heard of if it wasn’t for the site.

Having been abandoned by my own GP I probably wouldn’t be here today without the help and support of a well known PFS Doctor.

I think the listing of PFS Doctors is one of most important things this site and others can do, especially for people who are in the early stages of PFS.

The only bad things about ph.com that I can see is the front page needs to be updated more and that new members can’t post straight away.

#31

The design here is very flawed and needs a breath of fresh air.

this place needs a new design, that has a little more positive outlook. maybe that banner with the propecia pills should go; it needs better organization and display of the topics; its outdated, needs a responsive design to work on mobile…

maybe this one for CFS is a good example healthrising.org/forums/ . notice how they dont call it experimental section, or theories section…they call it “Getting Better” - this is very important IMO .
This “theories”/“experimental” section MUST exist. The alternative is having people fleeing to new forums where they have more hope, and information will be scattered accross different data points on the internet , which further divides the community and is annoying to browse.

everytime a new forum opens, with home made recipes for pfs based on whatever new testimonial that came up (like recently mifepristone…), makes people erroneously (?) hopeful on solving this on their own,so they go ahead and spending money on these new protocols. which is money that could be going for research of course.

so locking down this section was a big mistake and played against the original goal of directing funds to research.

it should be researched what drives people to prefer homemade recipies to sending money towards research. whats driving this behaviours? Is it misunderstanding of the researhc, miscommunication, personality types, etc…

lastly i feel part of the issue is having people engaged. propeciahelp.com/ has its last post in september 2015. thats 2 years ago!! the place looks ABANDONED and HOPELESS. surely there are new posts that could be done to engage people in (for example) the research that is going on, maybe give their thoughts on why it is important and the best way out of this mess, and why people should support it. Surprisingly it is not that logic to many people.

#32

I think the homebrewers react so aggressively because the protocols are having limited success and any critique collapses the whole “we will recover/its only a matter of will” construct, as it is obviously built on quick sand. When you question the effectiveness and success rate of homebrew while suggesting a very long term orientated more complicated and unknown solution like scientific research, you take away hope. And since hope for a near term homebrew solution seems to be essential for many, they react viciously. At least thats my take. Its the classic shooting of the messenger phenomenon.

If the protocols would actually work, they wouldnt feel the need to react so aggressively. They would try to convince us or leave it but not be aggressive since they would be progressing along nicely and thats all that matters at the end.

I think the solution would be to let go of this claim, that homebrew has cured or will cure a substantial number of PFS victims. It hasnt happened and wont happen unless we make progress via the foundation. If that solution is to tough of a pill to swallow we could agree to disagree for the time being; let the homebrewers do their thing and we can discuss other issues together in a civilized manner. But the attitude, that homebrew is the solution for all is destructive, since it implies that anyone not recovered is responsible for his condition. In that regard I believe many in the homebrew community will have to make at least a partial concession, just like we are making one by reinviting them to propeciahelp.com.

I have no problem with homebrewing (even though I am not believer), as long as the universality claim, i.e. the claim that it will fix everyone who isnt lazy, is let go off.

#33

Hello everyone, thank you for your feedback and comments… I’ve reviewed this thread and there are many valid points, which is much appreciated.

This forum was started at 2006 as a lifeline for PFS sufferers and it continues to be that to this day, and I’d like it to be for the foreseeable future. I spoke with Awor on the weekend and we had a good discussion about the future of PH.com, including a site revamp and updated forum software. We are still hashing out the details and this will not be an overnight process, as there are many things to be accounted for and sorted out. We ask for your patience on this as it is a very large task, considering the amount of history on this site and data to be migrated and configurations required once we have a finalized plan in place.

On my end, for various reasons I have not been able to put the same amount of time into the site and participate in conversations as I have in the past 11 years, especially compared to when it first started (including moderation). Hopefully, the forum software Awor is considering will allow for more community based moderation options to help spread the workload.

In addition, looking back regarding closing of the Theories section, I can see now that this had a negative impact in driving membership to a more experimental treatment forum, which is completely understandable. Awor and I are reviewing ways to incorporate more experimental treatment areas for the next iteration of the forum, in order to unify both groups for a stronger community overall.

There are many other valid points you have all made which we will assess, and we appreciate your contributions. If you have further input please continue to share it in this thread.

Thanks again for your continued support, as we work towards a brighter future for the site and each other. While things may have slowed down more recently, we are confident that with a proper revamp the community will become stronger than before and make even more of a difference in generating awareness and research interest in our cause.

#34

Thanks Mew, that’s great - can’t tell you how much I appreciate all your ongoing support to PFS sufferers.

#35

Thank you, Mew.

#36

Great discussion, you guys, and thank you sincerely to Mew and Awor for creating and maintaining this space… it truly is a lifeline for so many, as we all know.

I agree that supporting theories and being liberal with the ideas (however strongly one many disagree) is a good thing. Yes, I don’t think that eating a bit of tofu is going to cure this (personally) 6-year-and-counting plight, but if someone wants to make an argument and has put in their time and research, hey - I’ll entertain it. :wink:

And I have long-since thought that a modernized, updated software revamp is long overdue. The only thing I would hope is that nothing is lost in the process. As we all know, sometimes searching through old and new posts is incredibly helpful for so many reasons… It is essential to have this place as a PFS encyclopedia.

Thanks again to Mew, Awor, and all those who contribute.

#37

I think the site is fine even if it hasn’t been updated. It saved me personally a lot of headaches reading about others’ experiences with finasteride. I knew what to expect and that’s a big relief. I didn’t need to have my blood levels checked to know that even if they were normal I would still have lasting side effects.

I do think that some of the attitudes around here to change though. Hair loss isn’t just a cosmetic disease, a lot of people who go bald early when they’re young also get enlarged prostate issues, I’m in my 20’s with an enlarged prostate and every prostate drug out there is an androgen inhibitor. The only safe treatment for it seems to be Cialis, it has its own side effects which puts some people off using it but I’m not aware of it having permanent side effects. But if Cialis doesn’t work for you what are you supposed to do then? When I see posts here of people having kids and saying “We shouldn’t have taken this drug when we already had girlfriends” or that guy who said his kids were healthy when he had them post PFS. It makes me realize the attitude is no better than the pro-fin people who disregard people who have side effects. You’re passing on this disease when you have children that are male. It’s as bad as the parents who let their kids take accutane. Yeah finasteride ruined your life but you keep ruining your children’s lives too. My father doesn’t have hair loss or prostate issues, but my maternal grandfather did and here I am decades later down the family the tree suffering because of their negligence.

#38

Don’t worry, we’ll certainly migrate all of the content (i.e. topics, posts, attachments, pictures, private messages, etc.). There might be a few infos in the user profiles that we can’t move. The whole migration process is fairly complex, that is why it will take us some time to complete this project.

#39

I would suggest that you two (ie mew and awor) get in contact with eden from solvepfs as well. If he can contribute to the new theories section and the overall website he might agree to closing down solvepfs.com.

#40

I am available to have a Skype call with Eden to discuss this. His participation on the future Propeciahelp.com would be more than welcome. Among other things, we need someone to head the whole user developed theories/therapies section (whatever the name for this will be). Neither Mew nor myself will be in a position to take on that role. Maybe someone can help to put us in touch. If you are that person (or if you are Eden), please pm me.