Message from Awor: State and Future of Propeciahelp.com


#1

Hi to everyone, old companions and new users I haven’t met. I am having a few days off and decided to revisit this site after being absent for a long time. This is what I found:

You guys are right to complain. Ph.com has been an important resource for many finasteride victims over many years. The site has been somewhat neglected by its admins for a while now, for various personal reasons I suppose. I will touch on mine in a bit. The result of this neglect is that patients have flocked over to other sites, which is a bad thing for our cause. Why? When PFS patients split up all over the place, our formerly centralized group loses visibility. Big groups in one place have power, divided groups are weak. Boccalini and Machiavelli have written about the power of groups vs the weakness caused by division, “divide and conquer” is a well-known phrase from their work. New PFS sites are not solving anything, they are just weakening the cause by dividing the PFS user base.

Admittedly, this problem is largely home grown. I understand this and would like to rethink and relaunch ph.com, with the objective of making it attractive again and sustainable in the long run. People should not feel that they need to go off and build their own forum. Qualified members who want to take on a leading role, should have the opportunity to do so right here at ph.com. In my opinion, this is the only way that this forum, or any similar platform for that matter, will be sustainable in the long run. In other words, ph.com should not be dependent on the interest or availability of one or two individuals.

As the older members on this site may recall, I have been strongly involved in PFS research. I am one of the original founding members of the PFS Foundation. Together with a few others, I helped initialize the first PFS studies. The most promising study on PFS to date, in which I was deeply involved during the design phase, will hopefully publish in 2018. My work with PFS research has taught me that solving PFS is a long-term project. We won’t solve it in a forum, be it called propeciahelp.com or otherwise. But what we can do, is keep this problem on the map, by making the community as visible as possible. We can consolidate our knowledge and experiences in one place, like we have in the past. We can try to help each other the best we can, by sharing our experiences on how to deal with this problem. If we spread out all over the internet, it will hurt us on all accounts.

This site will only stay strong and survive mid to long term, if we can identify and fix what currently is wrong. I have some ideas about this, and have reached out to Mew to discuss. Hopefully he will get back to me soon. In the meantime, I would appreciate everyone’s thoughts on this. See my questions to the community at the end of this post.

I would now like to say a few words regarding my personal situation and as to why I have been away for so long. Looking back, it was a mix of things. For starters, I was not always on the same page with Mew regarding certain strategic decisions regarding ph.com. Not being able to find a common approach to some questions of importance to me was a demotivator, and caused me to lose interest. The second thing which demotivated me was all the theory trolling and infighting going on. At the beginning, I tried to explain and reason with some of these people, but to no avail. At some point, I just got tired of discussing nonsense theories with a few omnipresent trolls. Also, I have a family to take care of. They already lost a good part of me to PFS, and I did not want to lose them altogether because of the time I was spending on PFS related matters. PFS has hit me very, very hard, on pretty much all accounts. A “therapy” based on Milk Thistle a few years back gave me the rest. Since then, I am not recovering anymore. What energy I have left, I often must focus on managing my own life.

So why am I back? Well, I am not back in the sense that I will be posting again on a regular basis. While revisiting this site after a long time, I noticed that it is sailing around like a ship without a crew. Even if I am pretty much out of the picture, and Mew doesn’t seem to be very active anymore either, I don’t want this site to (slowly) die. It would be a shame and huge loss for the PFS cause.

Ph.com has been a life saver for me and probably thousands of others who visited this site. When doctors don’t understand or even believe you, it is of vital importance to have a patient support platform like this. Kudos to Mew for starting propeciahelp.com, we all owe our biggest respect to him for his excellent work and the great leadership he has donated to our cause. I have not talked to him in a long time, but I can imagine that his personal situation is not entirely different to mine. The point probably comes in most PFS patients’ lives, where one tries to just move on. Circumstances change, interests change.

Therefore, I feel that we need to build up a new generation of moderators, who can increasingly take over the role that Mew, myself and other ex-moderators are not able (or willing) to fulfil anymore. During all these years, and to this day, I am also running the platform that ph.com is based on. The software platform is now hopelessly outdated and needs a serious overhaul. I have a clear vision of what needs to be done in this regard, and am prepared to take care of it after having spoken with Mew (and hopefully having found an agreement on the future direction with him).

Finally, I would also like to say a few words about the science. I understand people have been missing feedback on the studies, published or not. Unfortunately, I cannot comment on ongoing studies. Whatever can be officially communicated will be published on pfsfoundation.org. All I can say at this point, after almost 10 years of PFS research, is that the picture is finally starting materialize. It is my hope that we will have a basic understanding of PFS at the molecular level within the next 12-18 months, representing a huge milestone in PFS research. With this understanding, we can then start thinking about what can be done about it. It will at least take some of the guesswork out of finding therapeutic options. Even though this milestone is coming within reach, we are not quite there yet. This is the main reason why neither the Foundation, nor any of the scientists or myself have been in a position to make any statements related to the root cause. Everyone of course has their own ideas and theories, but those are worth nothing. We can’t act on theories. In order to be effective, we need clear and precise molecular level targets.

Likely, further studies will then be needed, which will “zoom in” on some of the findings, or work on discovering effective therapeutic options. “Solving” remains a long, steep uphill battle, and will require lots of funds. There are no short cuts if we want to be effective. We desperately need to understand the biological root cause of PFS so can achieve victory one day, and are not just poking around in the dark.

Having said this, it is very well possible that the community will find therapies which will help in improving the quality of life of some, without knowing or understanding the underlying mechanisms. To be more successful in this regard, we need to find ways to improve the visibility of therapeutic attempts vs. their effectivity, so we can increase the efficiency of our home grown therapeutic discovery process.

I would like to wrap up the science topic with my take on the future of the scientific process and where my hopes currently lie.

I have reason to believe that the persistent side effects arising from:

  • 5ARI’s (finasteride, saw palmetto, dutasteride)
  • 13-cis-retinoic acid (Accutande, etc.)
  • Various Antidepressants
  • GnRH Analogs (Lupron, etc.)

are related in terms of a common molecular mechanism. Assuming a better understanding of the underlying mechanisms of PFS in the foreseeable future, it will then be realistically feasible to validate this hypothesis against the aforementioned patient groups. If it turns out to be true, such a common denominator would be the best thing that could happen to us all. We would then be talking about a problem of global interest, and funding of research will hopefully become a problem of the past. As said, division weakens. However, the opposite is equally true: Large groups are relevant, which inherently gives them power.

I would now like to open the discussion regarding where you think that propeciahelp.com should be heading to. Please think about and comment on the following questions. I would not like to use this thread to start discussions regarding my science related comments. We can discuss these once the next study publishes, but not now.

  • What is good about ph.com?
  • What is bad and needs to be changed?
  • Why have some users left to other sites? What do those sites offer that ph.com doesn’t?
  • What do people expect from such a site?
  • What can users contribute in return, what kinds of involvement would users like to have (besides participating in discussions)?

Would you like to get more involved with ph.com, perhaps as a moderator? If so, please pm me.

Last but not least, I would like to thank every single person on this site for their support and contribution to the discussions. Additionally, I specially would like to thank all those, who have supported the PFS Foundation with their donations.

Please keep up your support for propeciahelp.com, so it will still be around for a long time. Please help us to make propeciahelp.com better by giving us your feedback to the above questions.

PLEASE PROVIDE YOUR FEEDBACK HERE: propeciahelp.com/forum/viewtopic … 16#p106516

Thank you.


How many people suffer from PFS and do you think there will be a cure soon?
Ongoing research into PFS
I got "PFS" from Arimistane. Perhaps that could give insight into what PFS is?
#2

I would like to reply to this old post. Nobody did at its posting and I feel the need to reply.
I don’t understand why this forum is in such a bad state.
Now with the studies and Pfs Foundation is it not even more vital to keep a large group of Pfs members united?
I know that living with PFS is not easy and we all have lives but have the founders of this forum gave up on the chance of things getting better? Is this forum forever dead?


#3

Sorry, I missed the link in the post where members have replied.


#4

I think it would be good if PH provided people with guidance on how they can bring more attention and funding to research and development of therapies.


#5

who do you mean with “they”? We are currently working this angle: