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Other Peyronies Disease Discussion Boards => Open Questions or General Comments (that won't fit under any other topics) => Topic started by: howtheheck on December 22, 2021, 09:35:35 PM

Title: MikeMatts angry post- has some validity
Post by: howtheheck on December 22, 2021, 09:35:35 PM
I get that his attitude was wrong, and everyone's response was focused on his negative comments.  However, I have often thought similar.  If you look at the Survival Guide, it was posted in 2013.  Maybe an update would be good?  We can still make it positive by saying:  that although the Urologists associations both in Europe and USA do not officially recommend Pentox, and other supplements, we have had antidotal evidence on this site of improvements and should be considered an option.  Maybe even more updates of how traction has helped or new studies.  I think Dr. Trost has stated he has finished some new studies recently, if they are published maybe we can add links.  VED is still strongly recommended by EU doctors, etc. 

I would be willing to help more on verbiage to update if it is deemed feasible or needed by the moderators.  Just my thought only, and I am ok with it still staying the same if that is what everyone wants.
Title: Re: MikeMatts angry post- has some validity
Post by: FlatteningTheCurve on December 26, 2021, 10:59:32 AM
Hey,

Yes, I think you are taking a very constructive angle on what mikemat was saying, which is admirable!

I am all in favour of updating the content on the forum so that is reflects current general trends and scientific evidence as much as possible. I definitely read a lot about Peyronies Disease and actively seek out information that is not in the survival guide and try to share it whenever appropriate and it is difficult to decide what should be included there and not. I guess there are a few points to discuss before the survival guide is updated:

1) Is there a need to update the content of the survival guide specifically? Has any new generalisable evidence emerged that should be shared there rather than elsewhere? If you are looking for scientific evidence regarding treatments for Peyronies Disease or anecdotal evidence, there are plenty of resources and posts available elsewhere on the site, but is it better to include it in the guide?

2) If there is a need, what new evidence should be included? Who decides what to include? I guess Hawk or other moderators might be up for taking the lead on this but it is still worth raising as a potential issue.

3) If it is more about the wording or format of the survival guide (more links etc.), this can also be tricky as each member is likely to have their own opinion on this. I guess links can be added to different sub-sections of the forum, e.g. the resource library to a greater extent, rather than links to publications as these can disappear over time.

Again, I am all in favour of keeping content up to date but it is always easier to request something rather than implement it. Would love to hear what other members have to say regarding this as well.
Title: Re: MikeMatts angry post- has some validity
Post by: Hawk on January 05, 2022, 09:36:13 PM
I appreciate the interest but for clarification, the Survival Guide was initially posted in 2013 but it certainly is not static.  It is a living document.  It has been updated within the last couple of months. When I update it I do so by editing the original document therefore it keeps the original date.  If I were to copy the content to a new document and delete the original it would result in MANY broken links on the forum and elsewhere on the internet.  These links need to be maintained.
 
The survival guide is an important first read to get members up to speed on the terminology of Peyronies Disease, definitions, finding a doctor, initial treatments they can consider NOW.  It is NOT intended as a textbook on Peyronies Disease or an advanced guide.

We do not put links about traction and VED usage etc. in the guide because we have entire boarts that focus on those topics.  If we made the guide 8 pages long no one would read it.
Title: Re: MikeMatts angry post- has some validity
Post by: Mikel7 on January 06, 2022, 05:59:56 AM
Quote from: Hawk on January 05, 2022, 09:36:13 PM
It is a living document
 
The survival guide is an important first read to get members up to speed on the terminology of Peyronies Disease, definitions, finding a doctor, initial treatments they can consider NOW.  It is NOT intended as a textbook on Peyronies Disease or an advanced guide.
Well stated and this should be stickied inside of the survival guide for future readings.
Title: Re: MikeMatts angry post- has some validity
Post by: FlatteningTheCurve on January 06, 2022, 06:11:03 AM
Thanks for the clarification Hawk, that approach makes perfect sense.