Discussion thread regarding improvement of Propeciahelp.com

There seems to be a problem with posting in my global announcement, so please give your feedback in this thread. Thank you.

Link to the original topic: propeciahelp.com/forum/viewt … 94#p106494

Thanks Awor,

Great to see your post, and my thoughts are below. Hope we can get a bit of a debate going…

What is good about ph.com?
It was great to get support from others when I realised I had PFS. And the best thing was the updates on research projects. This is what gave me hope and encouraged me to make donations for research. So than you to the people who set this forum up, and the kindness of so many users of this site when I was most in shock.

What is bad and needs to be changed?
Other than ‘active topics’, there is no real prioritisation of topics on the forum. So arguments between sufferers seem to get equal prominence as important news. And there is a depressing familiarity to many posts about people looking for a ‘magic bullet’ - someone tries a home remedy or it doesn’t work, or occasionally someone says they have made progress, but it doesn’t work for others. After a while, I think many people stop visiting the site because there isn’t much in it for them; there seem to be many cases of people - quite understandably - trying the same thing again and again but expecting different results.

I think that the forum could be improved by:

• More proactive moderation, with a focus on topics which can support PFS sufferers: such as how people have coped, dealing with depression, enjoying intimacy despite ED, and raising awareness of the condition. Indeed, guests from other fields could be invited to contribute through blogs and vlogs, and we could point to other resources.
• More regular updates from from PFS Foundation. This could be done without giving away sensitive information on research - but just informing of broad publication dates for example, as in your email above Awor.
• More of a concerted effort to raise money for research - ie campaigns, some info on how much money is needed, etc. Again, I realise the sensitivities, but think that there could be more done here.

Why have some users left to other sites? What do those sites offer that ph.com doesn’t?
I think that other forums have filled a bit of the void left by this one not being terribly active recently; other forums have also offered hope of finding a cure. That seems to be the key reason people log on, and the fact one hasn’t been found - and many argument between sufferers - mean people are looking for positivity elsewhere. But this is a shame: as you say, we are stronger together.

What do people expect from such a site?
Support, positivity, and useful resources. We are unlikely to find the magic cure through “homebrew” experimentation , so it would be lovely to have support on how to cope with PFS (see below).

What can users contribute in return, what kinds of involvement would users like to have (besides participating in discussions)?
Good question. I think people would welcome involvement - for example being asked for ideas on key topics to explore through the forum. One months, the topic could be having a relationship despite ED; the next months it may be coping with exhaustion, or raising awareness of the condition. I’m sure people would have good ideas on what would be helpful here - ie maybe inviting a sex therapist to give tips on the forum, or tips from a campaigner on how to educate local doctors and key opinion formers on the condition (such as draft letters for people to adapt and send to their local GP and/or MP).

I think that more proactive moderation on this site would make a huge difference and help build a sense of community.

My suggestions for the revamped PFS website would be:

1. More organized, cleaner look. Less depressing colors.

2. An always visible donations button that links to the foundations website and encourages propeciahelp members to set up a monthly donation. This button/banner should be visible from all sections of this website. I would suggest placing it on the top right of this website (just like the propeciahelp.com logo on the top left of this page). This would be a significant improvement of this website as it would present a rational alternative to dumping all of ones financial resources down the rabbit hole of quackcures.

3. I have already made this suggestion to mew and the foundation, however they have been sceptical: There should be a prominent list of those members who are monthly donators. This can be verified by donating via paypal with the same email address that is registered with propeciahlp.com. I think this would encourage all members to contribute. Also the list could be a legitimate source of hope especially if combined with updates and scientific discussion by qualified people like yourself.

4. Despite of what I said above and will say below, I support the reopening of the theories section. I really like your idea of summarizing the failures/ successes of homebrew protocols (mostly failures) at the top of that section. This will introduce severely lacking discipline and accountability while giving a realistic and helpful overview of past protocols. The moderator in control of that summary would need to be you or someone as rational as you are. It would need to list people reporting improvement while on the protocol and people reporting no change or worsening in symptoms.

5. We have to get eden to close down solvepfs in exchange for the reopening of the theories section.

6. You awor and other scientific people have to post at least monthly; as a counterbalance to people going all in on scetchy treatments.

Here is my take on the current state of propeciahelp.com:

The reason people split from this website is because a member called eden took it upon himself to create a new forum called solvepfs. I have been very critical of that decision for the reasons you mentioned in your post. It is incredibly silly to split up a community that was small to begin with. Now we are even less impactful. Without him closing down the website, it will be difficult to regenerate lost momentum.

I have to confess one thing however: One of the reasons many people left this website, is that mew closed down the theories section, which was a decision i strongly supported. In hindsight it didnt really stop the theorizing on the website but it increased the pace of migration to the solvepfs website.

At the end of the day, this website is highly frustrating for any rational person: There is no cure and not even an effective treatment. This leads to major theorizing and wishful thinking. People waste substantional financial resources to pursue delusional treatments that are promoted on this and other websites. This site is only good for ackknowledging the existence of PFS, which is important for newcomers. Beyond that it drives people crazy, which is one of the reasons it has lost momentum and members.

To summarize: Both camps, i.e. the homebrewers and the sceptics, have contributed to propeciahlp.com becoming more and more irrelevant. First the homebrewers went full retard by following and glorifying a lunatic called justquitdut. Then the sceptics overreacted and made a hopeless attempt at shutting down the madness by closing down the theories section. This was uncalled for as people need hope and have a right to make foolish decisions. It was also ineffectual as it led to people migrating to solvepfs.com. We can rectify this silly split up by accepting different viewpoints and by reopening the theories section. In exchange the homebrewers have to convince eden to shut down solvepfs.com.

Love the idea of summarising the failures/ successes of homebrew protocols at the top of the theories section.

Would be great to get people’s views on Awor’s post. What support do you all want from this forum? Let’s work together and help each other…

I’m afraid that this is more of a top of my head post than a more considered one, but like pvdl, I feel that the desertion of members happened in sync with Solvepfs and mew’s decision to close down the theories section (courtesy of justquitdut). Like all things, there will always be views expressed on any number of sites which deviate from the wholly “rational” and it is sadly the job of moderators to jump in to keep things from becoming derailed. We can’t be overly concerned about the purity of theorising, as long as it is presented as such. And there will always also be ego clashes. It comes with the territory of any forum sadly. I’m also in agreement with pvdl with re-opening the theories section as despite its sometimes more outlandish contents, some members clearly have a need to share ideas and with this avenue closed to them here a migration was inevitable.

Another thing which I feel is VERY important is support for those who have JUST ARRIVED at this site. At this time they are probably at their most vulnerable and careful consideration needs to be given in presenting some introductory support, and that includes active moderation. As moderation is solely mew’s domain just now, sometimes guys are not having their first posts verified for up to a month. When guys are in a distressed state the need to reach out and to be responded to in turn is paramount. I dread to think how this must add to their sense of despair. Hope is also part of that, and the site needs to promote the fellowship and positive stories, as there is naturally a lot of negativity about because of how this drug has harmed us. Possibly involve the foundation as part of their supportive work to provide links.

As well as support, any members of this community could share in getting the message out and maybe have a section that both shares and encourages media campaigns regarding awareness.

One thing I feel is vital is for all existing posts to remain on-line, even if they are archived but always accessible. They contain all our testimonies and are still a vital resource. They also contain the first hand testimonies of some who are tragically no longer with us.

I don’t believe we can force eden’s hand in closing his site as it is up to him and it is doing a lot of the good that this site used to. We just need to let people know in all the various pockets of the internet that propeciahelp has found its mojo again. We could also promote it on other sites, although maybe he’d be agreeable if there was some collaboration.

That’s just some stuff off the top of my head. If I poke about a bit more I’m sure I can come up with other stuff, but I felt it important that I got down my initial thoughts.

WoW talking about syncronicity!

Let begin with what I wrote today on Solvepfs.com:

So as you can see we are in the same page, all finasteride users should be in one forum! instead in divided!. Also the forum should be “divided” in the differents sections related to the users interest, for example:

• Reader only: He can read everything but cannot post in all thread only in “newbie threads”.
• Junior Member: He can read/write in everythread as you ahve now after completing some pools, and giving his personal experience with pfs. We should be especially interesting in recollecting data from new users. He can be a Junior member WITHOUT having taking finasteride, but he will be market somehow, he will have access everywhere unless situations required.
• Active Member in community: He is willing to spend time to help community, he can be a moderator of the forum and/or organizing the data recollection, or giving ideas about what we should next. For example he could organized all the users by blood test in a excel so we can take a look at the data and present it for further studies/ideas.
• Researchers out of foundation: There should be budget for researching outside of foundation or within foundation, researchers should post their ideas of the studies the want to make, and ask for fundings, opinions, critics, in a specialized subforum. All researches should follow the scientific method, and it would be perferct if we have a scientific method moderator to take charge of that subforum.

For example I find very interesting that near half of pfs that have vote in my pools regarding flu says like me that they hadnt had a flu since pfs, we could create an easy experiment around that…

• Marketing!!! You need marketing on facebook, google, etc… some of the funds of the foundation should go to marketing only, marketing will atract more funders and users!

• You should unban experimentation forum, I dont say it should be organized different, maybe with a specific moderation following the scientific model, but experimentation and theories forum should be here, we dont want to stay in censorshipland.

Some of my ideas, I still have some brain fog … so hhehe

If awor is willing to modernize and improve propeciahelp while reopening the theories section eden should be willing to support this centralisation effort by closing down solvepfs. It makes a ton of sense and has no real downside for him, since theorizing will be allowed on propeciahelp again. I dont see how the community benefits from having a dead website with a prominent name (ph) and a more active website with an obsucre name (sovepfs). An active website with a prominent name is the way to go. Eden could be involved with the update of this website.

Firstly, I am so pleased to hear from you, awor. I have extreme PFS after a 0.25mg dose in May (I also took 2 pills in 2011), and as I said in my blog post, after reading the forum back to front I found what you have done for this problem remarkable. I cannot PM you because I am a new member, but I would like to thank you deeply. It is a tragic loss that you do not more regularly post, but I can understand much of the frustration already having recently seen bizarre and baseless theorising derail sensible discussion. It is disheartening and I suppose inevitable in a desperate situation with no concrete molecular explanation. I agree with what a lot of what PVDL says, but my additional thoughts are below.

What is good about ph.com?

It is a great repository of the many things people have been through and tried for this condition. It’s simply invaluable in that regard. It alerted me (well, you did) to the possibility of hope and organised progress. That is a major reason I have not ended my life yet.

What is bad and needs to be changed?

A lot. Firstly, I was (and am) suicidal due to the severity of what I’m suffering and the intractability of the problem. It took so long for my initial post to be approved here I chose to join SolvePFS. The inability for new users to PM and post is frankly dangerous and needs to be addressed urgently.

The forum looks cluttered. There are policies and announcements littering the main forum landing page, which makes it overwhelming and hard to navigate.

Why have some users left to other sites? What do those sites offer that ph.com doesn’t?

The ability to actually post and PM was obviously the biggest issue. I simply needed to connect, and this site did not provide that. The reason I went to a forum called ray peat was that, via google, I found a user making a very sensible study based suggestions of why some things may or may not be the case in PFS, which is summarised in this topic. The forum looks very nice, works well in functionality and therefore was a pleasant place to discuss things even if the basis of it was some controversial dietitian I’m not really aware of. Unfortunately, after this discussion drew some interest, a complete charlatan emerged saying that PFS was a simple problem that he had repeatedly cured, claimed that studies are wrong and he has his own evidence from his own mysterious lab that he coincidentally didn’t keep. Amazingly people were enthusiastically convinced with no citation whatsoever. Further discussion of any worth ceased and it set people on a complete goose chase taking an abortion pill. It was a highly embarrassing thing to witness, and really highlighted to me the desperate, desperate need to nail down the molecular mechanism of PFS not only to address it but to stop the senseless fracturing of the community and pied pipers. We simply have to pull together as much as is possible to tackle this issue. I will happily focus exclusively on this site if it is revamped, and believe it is necessary to encourage others to. I would hope when a picture of PFS emerges that wild theorising and confusion of downstream effects as cause will hopefully lessen naturally.

What do people expect from such a site?

A caring community with a real scientific direction. I also believe it is reasonable after the coming unveiling you allude to that the foundation and sufferers are less disconnected. There simply must be more interaction for both fundraising, hope and a sense of progress. I think this forum could have some scope for this.

What can users contribute in return, what kinds of involvement would users like to have (besides participating in discussions)?

I made some suggestions on what I believe could be done in my introductory post in July. I’ll paste it here:

Thank you again, awor.

What is good about ph.com?
Near everything is good, but can get much better!

[b]What is bad and needs to be changed?[/b]
You need more marketing!
Need to divide the website regarding the type of viewer more, sufferer, investigators, doctor, lawyers.
Has to have a data recollection mechanism, and data organization, regarding symptoms, blood test, etc... there is one but is very primary.
Need different types of users and allow users to vote other users, so newbies have a better idea.
Needs to have a transparency over donations and destiny over donations, this can be done very easy to give the donator privatly a code: for example:  q8208ua, and the publicy announce that code represented x$ donation on day xx/xx/xxxx , the donator can pick if he wants to make public his donation on not. In case he wants also will be added the name.

Why have some users left to other sites? What do those sites offer that ph.com doesn’t?
Nowbody wants censhorship, you could divide the forum in “scientific reseach” with a science moderator that check it, and unscientific research, if you want. Theories should be allowed also. People leave because that, we all suffer.
What do people expect from such a site?
They as new sufferes expect: Information about what is a what is not, typical symptoms of others, legal information, state of things, etc…
As advance users/investigators: They want data that can be analize if we organize all the data in pool about certain topics.
Information and chatting with other sufferers.
What can users contribute in return, what kinds of involvement would users like to have (besides participating in discussions)?
Discussion is more or less ok, but certain pool about some issues should be send to pfs users, iw we create a nice database with users that we can ask them for information, maybe we can generate an hypothesis, Im very sure inmune system is related, hadnt had a flu, and feel much better after I had some kind of constipation, or done things that lower inmune system. I also have had libido surges + correct erections, momentarely.

For starters, MANY thanks for all the great feedback you guys have given. Though it was a little disappointing that despite over 800 views (to date), we only got 12 responses so far. I also had a few people who sent me pm’s and did not want to post publicly. Thankfully, all your responses were very detailed and it was interesting that they are all highly correlated.

The following is a summary of your feedback, including some pm votes I got. Further down, I will then voice some thoughts on how we should proceed.

This is going to be very long. I hope you guys will have the mojo to read through this.

What is good

• Input regarding research (but see same point under potentials as well)
• A great resource for PFS patient support, with potential for improvement

Our Potentials

1. Interface of forum is outdated and not user-friendly
2. Site doesn’t look professional anymore
3. Depressing colour scheme
4. Can’t find important information because it gets drowned in the mass of posts / Important information doesn’t “stick out” / Current category structure is too fine grained and not useful
5. New users should not be held up from posting due to unavailability of admins / Post and new user requests often don’t get approved for many weeks in some cases
6. Closing the theory section was a huge blow
7. Working together and not against each other: We are too small of a community and too fragile, to be wasting energy on infighting and going off in all directions to build our own forums.
8. Users would like more feedback regarding studies
9. Moderation has been lacking for a while now, tied to only one person (Mew) / We need more moderation.
10. Community feeling missing somewhat
11. Stories get repetitive after a while – different users are trying the same things and expecting different results
12. Broaden the conversation with specialists and possibly patients external to the community
13. Encouraging donations to the Foundation by making donators visible and giving them a certain status
14. We generally need better marketing of our cause

Ok, so what does this mean? Based on your feedback and my own opinions about the questions I asked, this is how I would see Propeciahelp.com moving forward:

Solving Problems 1-5, and partially 6: Kick out phpBB

First and foremost, we need to move away from the forum software we are using for this site, namely phpBB. It’s a steaming pile, top to bottom. It’s a piece of software designed in the 90’s, which still looks and works pretty much the same as when it came out over 17 years ago. Many of the problems we are having in this forum are related to this antiquated software stack. I cannot begin to imagine why solvepfs chose to use the same outdated software we are running on since over 10 years. There is much, much better these days. I will go into some detail on this now, because it is important that you understand why our forum problems are also due to phpBB.

As a user, I don’t want to come to a site and first be faced with a bewildering list of categories. I want to instantly see a list of latest topics, what is new, what is trending, etc. I want to be able to sort these lists by just clicking on the heading. If I like searching by categories, I should be able to do that too, but it shouldn’t be forced upon me like phpBB (i.e. this site) does. Tags would be great too, to help structuring content by more dynamic viewpoints than just rigid categories. What about searching? The search function of our phpBB forum software is a nightmare. Want to search for something? Ok, first click on the search icon, then the search form opens, then you enter your search term, then pause and think about all the overloaded search options, then press search and wait for the results. If the user doesn’t like the results, there is no in place refining (except the primitive search in box at top), you got to start all over again. Does this feel like the year 2017 and the age of Google? No way. As a user I want a search box right in the header of the forum, where I can search for anything anytime, and see a preview of my search results, just like with Google. In other words, the reason why our forum is outdated, not user friendly and ugly, is because of phpBB.

The next problem is the missing functionality in phpBB for posts and topics. A user should be able to…

1. vote for topics so the community can identify which topics have proven to be most valuable for the community. This kind of voting functionality can then be used to help make successful theories and their cures, or other treatments, readily visible.
2. “like” posts inside a topic. This would allow long topics to be summarized down to just the important posts, which have been “liked”. That way, the community decides what is important, and what is not. As an added benefit, liked posts should then project back to their authors, to improve their ranking in the community.
3. bookmark posts of importance to them. That way users can easily find useful information without having to repeatedly search for it.
4. flag posts which are off-topic, inappropriate or spam. This would also help in implementing a better new user on-boarding workflow (see below).
5. scroll through large threads and conversations, without having them broken into awkward and arbitrary pages by phpBB, where the user must constantly find the Next Page button. Paging is a waste of time and not necessary with modern software.

Another problem with our forum setup is that each new user must be approved by an admin (Problem #5). It would be impossible to run a large community this way, let’s say with five or six digit number of users. One of the reasons phpBB sites usually work with manual approval processes is because phpBB has an ancient software architecture which attracts spam like a magnet. If an admin doesn’t want his board piled over with spam, he or she must implement a manual registration or approval process. Now if the admin isn’t taking care of this manual task very regularly, board users will become frustrated, just like we are seeing here. Best of breed, 2017 age software is practically immune to spam, allowing for fully automated new user on-boarding workflows.

New users should indeed be allowed to freely registers and can start posting immediately, but with various limits. Each user will then have to start earning trust from the community so his limits get removed. The higher the trust, the more the user can do. If he starts misbehaving (or spamming), users will flag him and he will then be blocked. An admin can then review the blocks and permanently ban users as necessary. This way, the community basically is self-healing, and the admins and moderators can focus on moderating.

In other words, we need to move to a modern forum software package, which would allow us to make important information (posts, therapies, etc.) readily visible, and generally make it easy for the user to extract useful information out of a six-digit (and still growing) number of posts. Modern software is a prerequisite to support a effective theory>therapy discovery process.

If you want to see what a software package looks like that does exactly what I described above, please check out these links and post your thoughts in this thread:

discourse.org/features
meta.discourse.org/

The reason we are still running on phpBB instead of on something modern like Discourse, is because Mew and I are in serious disagreement on this issue. The result of which being, that we have been deadlocked on this outdated platform since many years. This is also an important reason why I had lost interest in working together with Mew, and had left the Propeciahelp.com for almost 2 years. I will make one final attempt at discussing this with him shortly, and really hope for this community that he will finally be agreeable to my suggestions.

Potential #6: Bring back the theories

From your answers, users obviously have a strong need to help themselves independent of the research process. Users are not prepared to put all their chips on the (very slow) scientific process. They need to be able to develop their own theories again, and work on therapies together with the community. Thanks to your feedback, I have more clearly understood that homegrown theories are the basis for finding potential therapies, and those are the basis for hope. In our situation, everyone needs hope. When we closed the theory section, we took away people’s hopes. With hindsight, this was not a good decision, and not in line with what we are trying to achieve (help PFS patients). We need functionality to specifically support the theory>cure process by making visible what works and what doesn’t. Thereby saving money and energy by not reworking failed approaches repeatedly. Conversely, things that do help, should be made immediately visible, even to new users.

One of the reasons this board is such a mess, is because of the very category centric organization thereof. One will find posts on theories and therapies in practically every one of the overwhelming number of categories, from the member stories to the treatments and theory sections. PFS discussions are complex and intertwined. Fine grained categories are counter-productive in such a context. When I talk with Mew, I will propose to radically reduce the number of categories and accommodate the theories>therapy need with the functionality described above.

Achieving a good overview will be most effective if we can manage to get everyone back in one place again. Otherwise, patients must jump around from one forum to the next, making the overview even more difficult. The prerequisite of this is that we all must become more tolerant to alternative views. That doesn’t mean that anything goes, because the community will then decide what is OK and what is not, by liking (or not) or even by flagging content. With good software, I would not be worried that theorizing would derail the forum any longer.

Potential #7: We need to work together

I don’t know Eden, who launched SolvePFS. Even though I feel he should have tried to solve his issues with us admins first (maybe he did, and I just don’t remember), he deserves credit for taking the initiative for trying to fix a flawed situation (i.e. closing the theory section at ph.com). We need people like him in our community. But to be successful, we need to work together with guys like Eden, and not against. If he is open to discuss, I am too, and I am sure Mew will be too. What is going on now is not in anyone’s interest, not in Eden’s either. Sooner or later SolvePFS will hit the same realities that Propeciahelp has hit, namely that solving PFS is not easy. Sooner than later most people will start to realize that making more forums is not the solution to solving PFS either.

Working together also needs to be improved here at propeciahelp.com as well. To continue to exist in the long run, Propeciahelp.com needs to move from a Mew centred to a team/community centred management approach at Propeciahelp.com, where everybody takes care of what they are best at doing, and have the most expertise in. Mew of course, has to be agreeable to this radical change in management style.

Potential #8: Users want more feedback on studies

This is probably one of the most difficult ones to solve. All I can promise you is that when Baylor comes out, I will provide you with an overview of how it all fits together, based on what has been published. If it won’t be on Propeciahelp.com, it will be somewhere else.

Potential #9: Moderation has been lacking for a while now, tied to only one person (Mew)

This doesn’t depend on Mew or myself, but rather on you guys. No single person, not even two guys, can shoulder the load of moderating a forum like Propeciahelp.com over the long run. Neither Mew nor myself are service providers. We are part of a community. To make this work in the long run, other community members must also donate some of their time to help moderating this site. As said, if you are available to help, please pm me. This is one of the critical success factors moving forward.

Potential #10 Community feeling is missing somewhat

I am little short of ideas regarding this one, besides improving the software so the community can function better and providing more moderation. Maybe you guys can help define that one a little bit better, including proposed solutions.

Potential #11: Repetitive stories

I guess this lies in the nature of the PFS problem. As far as I can tell, at least part of the repetitiveness is because new users come to this board, and have a go at therapies which in the past have clearly failed. Making failed attempts more visible can be done through software. Perhaps you people can give some more input in this one too.

Potential #12: Broaden the conversation

This is also a point I would like some more input on. What comes to my mind is a conversation which I once had with a very smart scientist. She told me that it is often very rewarding to look at similar problems to the one under investigation. I am sure most of you are aware that persistent side effects form drugs like Accutane, Lupron and various Antidepressants are very like ours (btw, all have anti-androgenic properties). Would it make sense to allow them to participate and share their experiences? Do you feel that specially the theory/cure process could benefit from this broader experience? Or do you rather feel that non-finasteride patients on the board would harm the focus of this board? As to inviting external specialists to participate, this is also a great idea. Someone has to come up with the resources to make this happen though.

Potential #13: Make Foundation donators visible in the forum

The suggestion makes perfect sense to me, and I will discuss internally. What I would absolutely avoid, is to give any details about the donated amount. Fifty bucks can be a lot for someone who is out of work and short on cash, while 50’000 can be peanuts for someone with considerable wealth. I would suggest to just make donors visible, through some sort of badge or group for example.

Potential #14: Better marketing

Here I see two things:

1. Software: phpBB is a catastrophic with regards to search engine optimization, i.e. providing content in a way that is easy for Google & co. to digest. This hurts our ranking in the net, which would be our most important potential for increasing our visibility. Having a closed forum like solvePFS is purely and simply a marketing disaster for our cause. Because they are closed, they are not indexed at all. Meanwhile, propeciahelp.com loses ranking because it is not as active anymore. On this account, we are both stupid: propeciahelp.com for using phpBB, and solvePFS for making a separate (and hidden) forum, thereby taking away our “juice”.
2. Mailing lists, activism and many other things: For this to work we could really use the help of some PFS patients with strong marketing backgrounds, who are willing to donate some time to the cause. Applications are very welcome – please pm me.

To sum up: In my opinion, to really become effective again, we need to:

1. Use the potential of modern forum community software and kick out phpBB
2. Provide a software assisted platform for documenting the success rates of theories and their associated therapies
3. Develop a team centric instead of person centric management approach to the PFS Community platform
4. Re-integrate propeciahelp.com and solvePFS in one place (wherever that may be)
5. Accept differening viewpoints, which includes differing opinions regarding how to approach and “solve” PFS.
6. Have more participation and support from PFS patients to help run the site, moderate, and help create awareness

Looking forward to discussing with Mew, and looking forward to your feedback:

• Did I understand you guys correctly?
• Do you agree with my conclusions and propositions?
• Do you have anything to add (specially also regarding the various questions I am asking above)?

Thanks

I like the software you presented. One major flaw propeciahelp.com suffered from before the closing down of the theories section, was that the homebrewers dominated to a severe extend, while the existence of a foundation financing professional studies was not noticeable for newcomers. The integration of the foundation and scientific discussion in regards to studies has to be a key part of the new forum. For many people this is a vital source of hope and optimism. In this regard I suggest these changes:

1. A prominent donations button linking to the foundations website at the top right corner of this website, which can be seen from all sections of this website.

2. I like the idea of adding a sign besides the usernames for those who donate monthly. I strongly agree that the amount donated should be irrellevant and stay private. It should also be a policy that people shouldnt be shamed if they choose not to donate or do so via a different avenue. The topic shouldnt be leveraged in a discussion that has nothing to do with it.

3. A summary of the foundations work and more scientific discussion.

If we have an active homebrew section while implementing the above suggestions, it willresult in a very dynamic and well balanced forum. It will satisfy both camps.
I also agree that the website suffers from category overload. Many categories are actually a textbook example of making a distinction without any difference. Absurdly the website in its current form doesnt present vital information in a accessible manner. The information is hidden in a sea of categories, threads and posts. Vital information on the main homebrew protocols that have been tried, their success rate, pfs itself and the foundation and its progress has to be readily available.

Closing down solvepfs will be vital. However even if eden wont allow this, we have to implement these changes. Hopefully members will return home even if solvepfs isnt shuttered.

I think there are many people who do not know English. They should be sections in other languages.

Thanks for your feedback. Foreign languages have repeatedly been a point of discussion between Mew and myself in the past. What approach would you see to this?

• Approach #1: The whole site would be translated automatically using something like Google translate. People would then post in their own language and everybody would be able to read the translated version. If a response would be in English, you would be able to see it in your own language for example.
• Approach #2: We would not translate anything automatically, but just rather have a category per foreign language. Non-English speakers would discuss in their own language. Many would not be able to understand the foreign language, so it would rather be a closed group. For this approach, we would need at least one moderator per foreign language category. I believe that Google would give us better rankings for the foreign language content in this approach, but I am not 100% sure.

What do you think?

All improvements are good, but we should have one end in mind only, to create a huge database of people suffereing pfs, that we could use to make hypothesis, making statistics, start lawsuits if neccesary. If we grew up to say 2000 activers, lots of power in that for future studies. Imagine 2000 user answering specific questions, engaging in investigation, acceding resources together, with the only goal in mind to understand this illness. Would be great!

We need to stay together people, we need manuals for begginers a complete pfs manual, so people dont waste time reading forums, there is some good information for begginers also but its difficult to access.

We need also manual for Doctors and Press, so the have quickly easy access to all the data they may need.

We need also a recolection of hypothesis that we will need to check if they are, for example Melcangi has confirmed the very low progesterone and 5dhp levels on plama: ncbi.nlm.nih.gov/m/pubmed/28408350/

We we have some solid hypothesis confirmed we will have a better map to resolve this.

I think professional clinical investigators could get very good information from data analisys if we recollect out data well. So they can start new investigation based on the data recollected from 2000 patients online.

Greetings

Hello awor,

first I want to say a big thank you for your effort in everything regarding Pfs!
Particularly the research part of this syndrome and coming back to modernize this forum to counteract the secession of some Pfs groups.

I think this is a great chance to revive the Pfs community and a turning point if Mew will give his approval. Otherwise I’m worried about the future of the Pfs community.
It would be desirable if Enden is willing to close solvepfs to unite the community again with all the accompanied benefits .

I like the idea of the new forum software with a new structure, “likes” and a vote function and agree that based on this the theory section does probably regulate itself.

Regarding categories in foreign languages I also prefer approach #2 to make the posts accessible to everyone. The german Pfs forum is very useless compared to ph or some other forums. I would like to see the integration over here as a subcategory.

A visible hint to donate towards the Foundation and making donators recognizable are also things I appreciate very much because I think donations are still lacking. I hope more people realize the importance of donating after Baylor is released.

If there is evidence that Pfs, Pssd, Accutane and some other syndromes are related due to its anti-androgen characteristics, including them here will generate a much bigger community with all the benefits you already enumerate.

I’m willing support your work if needed.

Approach #2 seems to be unheard of until now. Approach #1 would be good. You can always translate it in google translator. But I am not sure.

Admins would be translate from foregin language to english if needed.

I’m very much on board with what you’re saying, awor. I support this idea of a move to a modern platform, and also the aforementioned vast reduction of categories. This is really essential - this site looks like a relic.

With regard to failed attempts being re run, I am not sure any kind of flagging will stop this. This is a dire situation and I can understand why people just try any available treatment despite others’ failed attempts. When I say to people who suggest painkillers, anti depressants, hormones “people have done x or tried y”, they often tell me “that is poor quality data” and while we have no idea what’s going on in our bodies they have a point. And even when you know the likelihood of success is low, it’s unbearable to do nothing sometimes. I personally have valium in the drawer and a lot of codeine and am really nearing the point where I’m going to need to try something for relief.

I’d like to share a concern I have re sense of community. It’s very clear to me, simply by contrasting the new members topic titles and content on solve and many here with the older ones that an attitude has taken hold of “I’M going to beat this, I’M not going to end up like THEM.” I think this is based on the professed attitudes of a couple of supposed recoveries. This is manifest in the whole PFS forum at “swole source” where they basically try and diet, exercise and herb their way out of PFS. As far as I could see there was only one originally mild (I know pfs is not mild for anyone, but in relative terms) case who got better, the rest are doing a strict regime with extremely mixed results. The universally declarative and erroneous description English gave of the PFS crash was enough to clarify that what he and CDNuts recovered from was not the PFS myself and many others are suffering. I feel that while they give people hope that is sorely lacking from our struggle, it comes with a differentiation between those who “have what it takes” and those who can’t be bothered to get better, like they’ve swallowed a paleo Ayn Rand book. There’s a certainty that is completely unwarranted and unsubstantiatable. I absolutely am not suggesting for a second they shouldn’t follow the route they wish to take and believe helped them, but combined with other factors, you can visibly see this outlook has contributed to a serious erosion of fellowship and introduced a tribal competitiveness that is absolutely useless and self defeating. They talk of the victims here disparagingly and wish to differentiate themselves, yet theyve had no more results than any other forum. I really don’t see what can be done about this besides the uncovering of what PFS is, which really is making this struggle so impossible on so many levels. Everyone looks like a hypochondriac, no treatment works, sufferers left right and centre are saying “PFS is this!”, all the while it’s the cruellest punishment imaginable. I truly hope you are right in that this horror will relatively soon be dragged into the light.

I also would humbly suggest you consider some small amount of time coming back and joining us once this is done, awor. I can understand why leadership is not what you feel you’re able or willing to give, but you’re someone a lot of people will look up to here, and that can be a powerful thing.

PS thanks for moving my feedback here from wherever I posted it. I cant reply to your private messages because I’m not allowed, which is a real drag, so I’m mentioning it here. I’d also like to say that I’m willing to help in any capacity I can going forward. I am legally educated and a writer by trade, though PFS has destroyed my career and I can’t work. If you could PM me an email for contact purposes I would appreciate it.

With regards to Awor’s summary of suggested improvements, I am in complete agreement. Although I can navigate the current forum, this is only through familiarity, and if I was to see it as a newcomer I would imagine that it could appear both cluttered and overwhelming, and rather than having easy navigation there would be more of a sense of having to archaeologically dig through an accumulated clutter of a decade plus of people’s postings to both get a handle on how the forum works but also to seek out what is relevant to them. I believe that the subheadings in the current forum have their place, but it appears, especially in light of the moderation issue just now, that a change to a forum with more up to date software is probably necessary from the point of view of both survival and impact. This doesn’t in any way detract from the existing forum but in fact acknowledges its historical importance and the importance for all of us that it remains both active and relevant. Although it has achieved a lot, with the engagement of both new software and involved members it could achieve much more, whether that is in joining our voices with the patients of other anti-antrogen medication, or in crafting global awareness campaigns.

One other point regarding the existing forum, I access it directly, but I’m aware that it can be accessed from the wider propeciahelp site. This is part of what I was talking about in terms of the out-of-date feel about the current site. It feels that you have to dig through a lot of old copy to get help.

As I said in my previous post I feel that it is vital that all existing posts are somehow saved as these are vital testimonies and also contain precious nuggets.

And a more visible PFS Foundation affiliation will help both the Foundation and this site.