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Author Topic: Proposals  (Read 1492 times)

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hope794

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Proposals
« on: June 02, 2018, 09:37:14 AM »

Hi all. I registered on this forum less than a week ago, and i found it REALLY useful for certain things, and really useless for others.
The main problem here, on my opinion, is that the cooperation between us is at an "amateur level". What do i mean with this?
I mean that here people share opinions, method for VED use/types, treatments, and reviews about the treatments in a confusing and disorganized way. We NEED an efficient way to collect the data in a more organized way, because it can be really overwhelming and difficult for new users to obtain informations about something just by reading ALL the posts back from years and years ago.

NOW, i don't want to criticize without offering, or at least proposing, a solution to these problems. Furthermore, i would like to repeat that i LOVE this forum and i feel this is going to help me a lot in this dark period of my life, caused by this disease. Last thing i want to say before the proposals is: Why did i post it here on Developmental Drugs & Treatments? The answer is: because many points that i'm going to suggest are headed to have more infos about clinical trials, developmental drugs and so on. Furthermore, my proposal will be useful to collect data on known and less known method, especially the new ones, accelerating the process of obtaining infos and learn if they're useful or not.

Proposal N°1: Scientifically and Statistically-significant data collect

As many of us would have probably noticed, a new guy who is approaching this forum for the first time finds out that he has to read years and years of posts and experiences, trying to find out if a treatment is either good or not. The result is, often, more confusion than before. An example? PRIAPUS SHOT: Many people said that it's totally uneffective, other people said that was good for Erectile Dysfunction but not for Peyronies Disease, other said that it's good for Peyronies Disease also. We can't continue like this. I suggest to create, under EVERY treatment type, a section where we collect our experiences in a standardized way, without other comments or replies, so we can easily collect a statistically significant data and judge if a treatment is good or not.
A great example of what i'm proposing has already been done by the user james1947, and you can see what i mean here:
FORUM XIAFLEX RESULTS (Results only, not a discussion board) - Peyronies Society Forums      This made my research about Xiaflex really easier and now i've got an idea of how much it works, what to expect, and so on. If we have got a mathematician or statistician (or statistic? i'm not english mothertongue so don't know ;D) it would be cool for him to analyze this simple datas.

Proposal N°2: An organized way to to communicate with universities, research centers, pharmaceuticals, and so on:
We often read about a "new study that had great results on rats" but, many times, we never have other informations. One good way would be to communicate with the interested parties, for example "Doctor X who is trying to use an X cure for Peyronies Disease". I read that many people here tried to communicate with research centers, clinics and so on and often they didn't receive any answer. I think we need an efficient way to communicate with them to have fresh news, to know if they're opening new trials and need 'guinea pigs', and so on. Probably if the admin of the forum write/ask news to them as an "association" in a more official way, for example during conferences, or by email, letters, or phone calls, they will respond.

Proposal n°3: Diaries with reviews for people who try new treatments (no matter of strange they are)

I'll explain this Proposal with an example. The user 'JS1991' is going to fly to US STEM CELL CLINIC soon to try a Stem Cell Treatment who seems promising. He is really kind and gentle, and he already promised that will give us infos and results of the treatments. Infos include costs, places where the treatment will be done, ways of the treatments, opinions about the docs, results, follow up after the treatments, and so on.
He already created a sort of diary that reassumes my proposal perfectly: JS1991 Timeline - Peyronies Society Forums
This proposal is born because i was looking at stem cell treatments efficacy but i didn't find literally ANYTHING online about this. Many clinics propose this kind of treatment but i can't find any review about this. The treatment is really expensive, and that's why we absolutely need reviews. If the treatment work, then more people in USA will try and give us a feedback. If they'll not work, at least someone tried and others will spare time and money.

Proposal n°4: GoFundMe for people who wants to try new treatments
What if a new really promising treatment is proposed by a Norvegian doctor (for example) but our norvegian buddies haven't money to afford it?
I suggest to create, in this cases, a GoFundMe campaign to raise money to fund this "guinea pigs buddies". We are hundreds on this forum, and if everyone gives only 20$ each, we can obtain a good amout of money to fund the buddies. (only for really promising treatments..)

Proposal n°5: Create a section for "MILD Peyronies Disease"

What i mean with this? Easy: as any other disease, even Peyronies Disease has many grades of severity. For example, i have a mild form of Peyronies Disease (10-15° bend, and mild/medium Erectile Dysfunction). To distinguish between severe cases and mild cases can be really useful since many treatments can work on mild cases and not on severe cases, or vice versa. For example i haven't got any "HARD calcified plaque" so many of the solutions here for calcified plaque are not useful for me, as well as many of the solutions that can help me with my fibrosis can be totally useless for someone who has got a severe bend or hard plaque since here.


And that's all. Please take some time to read this, LET'S DO SOMETHING, let's be a team, and i feel we will have more results. Give this things a shot.

Hope794
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24 yo from Italy.Peyronie's probably since 2014.Since then,penis bends of about 10-15°, with a slight twist to the left.Moderate Erectile Dysfunction since 2 years and things getting worse.From pornstar-like to moderately depressed,but still fighting for a solution.

jusirmi

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Re: Proposals
« Reply #1 on: June 02, 2018, 01:19:31 PM »

I think you say some interesting things. For me this forum is good because many people talk freely everyday. In my opinion, researchers have so many work everyday that is difficult that they could answer to us. The point of gofundme it seems so interesting and a fundation that could fund some research it will be a dream, but i'm realistic and it seems difficult to realize. But in the last years i have seen an increase of research in peyronie's and this are good news
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Jack1909

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Re: Proposals
« Reply #2 on: June 02, 2018, 01:36:16 PM »

I’ll be in the US in July seeking for some experimental treatments. I’ll keep you updated.
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hope794

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Re: Proposals
« Reply #3 on: June 02, 2018, 01:54:21 PM »

Thanks for replying. Let's see if admins or moderators will respond.
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24 yo from Italy.Peyronie's probably since 2014.Since then,penis bends of about 10-15°, with a slight twist to the left.Moderate Erectile Dysfunction since 2 years and things getting worse.From pornstar-like to moderately depressed,but still fighting for a solution.

hope794

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Re: Proposals
« Reply #4 on: June 07, 2018, 06:05:24 PM »

It's been many days since i wrote this post. 110+ people read this post and only 2 answered.  I am really, really sad, disappointed and crestfallen. I tried to make some interesting proposals to improve the forum and the situation of us all, and nearly no one has been caring about this. I didn't expect thousands of answers, but a little bit of involvement. I created this to give some ideas, aiming to let someone hear our voice and help us with our problem. But, as i see here, no one really wants to move a hand to, at least, TRY to change the things, together.

Folks, remember that we're all on the same boat.
If someone wants to give a chance to my proposals, please feel free to do it. I'm always in to give an opinion or my help.
Regards, and sorry for my outburst of anger, but i didn't expect this lack of involvment.

Thank you
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24 yo from Italy.Peyronie's probably since 2014.Since then,penis bends of about 10-15°, with a slight twist to the left.Moderate Erectile Dysfunction since 2 years and things getting worse.From pornstar-like to moderately depressed,but still fighting for a solution.

LWillisjr

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Re: Proposals
« Reply #5 on: June 07, 2018, 08:03:43 PM »

I like your suggestions. Just because not many have responded doesn't mean we aren't interested. For me personally is an issue of time. I scan all posts along with doing routine forum maintenance. I didn't have time to respond until now.

Proposal N°1: Scientifically and Statistically-significant data collect
Just as James summarized the Xiaflex info, anyone is welcome to summarize other types of treatments. We can help you post where we think it makes most sense.

Proposal N°2: An organized way to to communicate with universities, research centers, pharmaceuticals, and so on:
Many people don't stick with the forum long enough to do this. Someone(s) would need to develop a relationship with some of the organizations and maintain the relationship.


Proposal n°3: Diaries with reviews for people who try new treatments (no matter of strange they are)
Several members have created valuable diaries of their own personal journey with Peyrnoies, and I am thankful for for this. Again, it is dependent on an individual member willing to take the time to document and share their story. Maybe we could combine these into a common area.

Proposal n°4: GoFundMe for people who wants to try new treatments
Interesting idea. But how do we guard ourselves from someone who makes a great story. We cumulatively raise $5k for treatment, and then never hear from them again. Also it sort of goes against some of our founder's personal perspective on the forum. And that is one of we would never solicit or ask for funds to support the forum. The forum continues to be funded (domain registration and web hosting) out of one person's pocket as this is his devotion to helping others. Despite numerous offers from others who would be more than willing to help contribute. I know what you are proposing is different, but still is a financial request for support.

Proposal n°5: Create a section for "MILD Peyronies Disease"
I'm open to more input on this one. I'm just not sure how to separate it out. Clearly someone with a severe curve (say 70 degrees or more) is likely looking at surgery to get the improvement they need. There are RARE cases of Traction, VED, Xiaflex, etc. etc. coming close to correcting a 70 degree curve. That why we separated out areas for the different types of therapies. But I'm open to input.


LET'S DO SOMETHING, let's be a team
I WELCOME your enthusiasm. We are only a small handful of admins and moderators to try to keep this ship floating. Many come here for help, find what then need, and move on. Don't get me wrong, that is why we are here. But more volunteers to help are greatly welcomed.

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TonySa

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Re: Proposals
« Reply #6 on: June 07, 2018, 08:29:23 PM »

Lots of great ideas, if you have a specific ask it might get more responses-I’d certainly let you know what I might be able to do.  Oh, I just saw this string, don’t know how I missed the first post.
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Crooked_Stick

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Re: Proposals
« Reply #7 on: June 08, 2018, 01:15:57 PM »

I think this site is mainly just a forum with no real leader or advocate just moderators. I posted in a thread a while back about the need to create a charitable foundation to help fund active research such as that being done by Mediwound with their MWPC003 injectable enzymes. Getting a product like that through phase 3 trials can cost $50-$100 million. They have literally shelved this product for now due to their limited funding going toward their other two products. I would certainly contribute to a foundation that was set up to help fund research into Peyronies Disease and it could also address similar diseases such as Dupuytren's as that would increase the size of the contribution base. Setting up that foundation would have to come from outside this forum unfortunately.

  Mediwound MWPC003 for peyronies! - Peyronies Society Forums
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hope794

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Re: Proposals
« Reply #8 on: June 08, 2018, 06:06:51 PM »

Hi all,
now i see more involvement and this makes me really happy and hopeful.
I try to answer to all:

for LWillisjr:
I understand that the forum manteinance takes away a lot of time, and trust me, i'm really grateful for what you guys do here. I think it's a great work, and a great chance for people with out disease to share opinions and experiences.
Regarding to the 1° proposal: My advice is to make a post like james's one on Xiaflex that would be able to reassume every result of every treatment. So, under the section "Verapamil", it would be cool to create something like the xiaflex post, to let us be able to evaluate the treatment goodness.
Regarding the 2° proposal: i thought that this forum was linked to an association or something similiar. Well, i think that an association would not be hard to create and would give us credibility, improving our voice.
Regarding the 2° proposal: i thought that this forum was linked to an association or something similiar. Well, i think that an association would not be hard to create and would give us credibility, improving our voice.
Regarding to the 3° proposal: i know that, unfortunately, it's up to the members to create diaries. But maybe it could be helpful to suggest it to the new and old members via email, or via PM, to let them know that it would be really helpful.
Regarding the 4° proposal: You're totally right. Not all the people are honest, so probably it would be much more complicated than expected.
Regarding the 5° proposal:: Well, you created many section about VEDS, XIAFLEX, VERAPAMIL INJECTIONS, and so on. Why would it be so hard to create a new one, totally dedicated to mild kinds of Peyronies Disease?

For Tsanchez12369: Thank you for your involvement. You're a veteran, way more than me, you would be really able to give some help in the future, if needed.

For Crooked_Stick: : We had the same idea! I know it's really hard to get a project on Phase3, but it's their work, and trust me: we all know that there would be literally NO PRICE to get rid of this disease. So, even if they will be going to sell a bromelain injection for 15000$ each, if it really works, well, i would do it. And i can bet you would do it too. So this project it's profitable. The only way to let them know this, as i said, is to communicate with them and tell em that there's a really high demand of a treatment for this disease.
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24 yo from Italy.Peyronie's probably since 2014.Since then,penis bends of about 10-15°, with a slight twist to the left.Moderate Erectile Dysfunction since 2 years and things getting worse.From pornstar-like to moderately depressed,but still fighting for a solution.

tiagofil

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Re: Proposals
« Reply #9 on: June 09, 2018, 06:44:06 PM »

.


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hope794

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Re: Proposals
« Reply #10 on: June 09, 2018, 07:23:16 PM »

Tiagofil, maybe i wasn't clear enough. My proposal to speak to clinics, university in an official way and so on was not finalized to let them focus more on Peyronies Disease, but only to know at what point they are with their research.

Concerning to the statistical datas, it's really simple to do it, as i said james already did it for xiaflex. Furthermore, i think that it's possible to check fake reviews/posts. They often come from a new member with nearly zero previous posts, and in their posts they usually publicize a specific clinic/doctor that promises a miracolous treatment. So easy to discover.
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24 yo from Italy.Peyronie's probably since 2014.Since then,penis bends of about 10-15°, with a slight twist to the left.Moderate Erectile Dysfunction since 2 years and things getting worse.From pornstar-like to moderately depressed,but still fighting for a solution.

tiagofil

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Re: Proposals
« Reply #11 on: June 09, 2018, 07:56:11 PM »

.



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Monty

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Re: Proposals
« Reply #12 on: June 10, 2018, 11:46:15 AM »

I would love a chat room o n this forum.
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68 UK, Erectile Dysfunction from 2011, unable to get full erection, Peyronies Disease from  2015 acute bend to left, VED & hand traction + 50 mg Sildenafil every other day, or when i'm feeling lucky, forum member November 2017. Fav Film&Song, TheGoodTheBadThe Ugly. A Day in the Life

hope794

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Re: Proposals
« Reply #13 on: June 10, 2018, 02:00:45 PM »

Great idea, Monty! Is it possible to do it?
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24 yo from Italy.Peyronie's probably since 2014.Since then,penis bends of about 10-15°, with a slight twist to the left.Moderate Erectile Dysfunction since 2 years and things getting worse.From pornstar-like to moderately depressed,but still fighting for a solution.

Monty

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Re: Proposals
« Reply #14 on: June 11, 2018, 02:41:07 AM »

I would think it would be easy, just pin a post "Chat Room" to top of "read this first" section, so it would always be on show, open to all, then we could all have a good chat as a group. ask each other question so on so on.
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68 UK, Erectile Dysfunction from 2011, unable to get full erection, Peyronies Disease from  2015 acute bend to left, VED & hand traction + 50 mg Sildenafil every other day, or when i'm feeling lucky, forum member November 2017. Fav Film&Song, TheGoodTheBadThe Ugly. A Day in the Life

hope794

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Re: Proposals
« Reply #15 on: June 11, 2018, 05:07:55 AM »

Let's see what admins think about it..  ;D
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24 yo from Italy.Peyronie's probably since 2014.Since then,penis bends of about 10-15°, with a slight twist to the left.Moderate Erectile Dysfunction since 2 years and things getting worse.From pornstar-like to moderately depressed,but still fighting for a solution.

TonySa

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Re: Proposals
« Reply #16 on: June 11, 2018, 12:33:55 PM »

Someone provided a link to a chat room, didn’t get much activity.  Perhaps if a few chat times were established more guys may participate?
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LWillisjr

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Re: Proposals
« Reply #17 on: June 11, 2018, 08:19:46 PM »

I know a lot of members communicate either via email or over private messaging.
There never has been much call or interest in a chat room. I don't know if makes sense for this type of forum.
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