Why don't you contribute to the propeciahelp survey?

Topics related to activism.

Why don't you contribute to the propeciahelp survey?

I participated or am going to do it
34
67%
I don't feel like doing
7
14%
I think it's completely useless
4
8%
I tried but I didn't succeed
6
12%
 
Total votes: 51
lw77
Posts: 89
Joined: Wed Aug 01, 2018 11:29 am
Contact:

Re: Why don't you contribute to the propeciahelp survey?

Unread post by lw77 »

I'll post here a link to a very important thread on propeciahelp:

Axolotl wrote: "Hi all, I am writing to remind you that you can participate in a valuable research project if you have experienced persistent symptoms for a minimum of three months after stopping finasteride, isotretinoin, or SSRI antidepressants. The survey does not need to be completed in one sitting and can be saved and resumed by returning to the link.
Recently @awor and I met with a professor with extensive understanding of cellular biology at a research centre where we presented early findings and discussed the issue at length. He was extremely impressed with the survey and the data coming out of it, and encouraged us greatly to do all we can to get more participants, as it could support crucial research. @sngr23, a member of the PSSD community, can confirm that another PSSD patient was present at this meeting.
Every participant counts - don’t just assume others will be enough! If you know PAS and PSSD patients who may not have yet participated, please let them know they can do so."

You can see the discussion here: https://forum.propeciahelp.com/t/pssd-a ... rvey/41576

As you can see an expert researcher in the field of cellular biology and biotechnology was shown the early results of the survey and he was impressed
and he found it very useful, recognizing the need to have a larger sample of people, to have greater validity from a scientific point of view.
So we really hope that a lot of us sufferers is going to complete the survey.
scripy3
Posts: 56
Joined: Thu Sep 20, 2018 11:23 am
Contact:

Re: Why don't you contribute to the propeciahelp survey?

Unread post by scripy3 »

Can you guys please pin this thread to the top.
It's very important work done there
Northern_Star
Posts: 66
Joined: Mon May 06, 2019 11:55 am
Contact:

Re: Why don't you contribute to the propeciahelp survey?

Unread post by Northern_Star »

Hi gals and guys! Good to see this place running again.

Thank you to all who have participated in the survey and who have promoted it in this community! It's highly appreciated and, as lw77 has pointed out above, it's already proved its worth before we have even started advanced analysis.

A little update for those who do not regularly visit our forum: Currently, 368 people have taken the survey, For the three major drug classes, this amounts to 202 for Finasteride, 90 for anti-depressants and 38 for Isotretinoin (Accutane). The rest are others. We would like to push participation from the PSSD community comfortably beyond 100 participants. So, if you haven't taken the survey yet, please do so! Participation from the Post-Accutane community is lacking so far, unfortunately. So, if you know anyone from that community, please ask them to take survey.

Finally, if you have experience with advanced statistical analysis and would like to help us make to get the most out of the data, please let us know!

Thank you, take care and good luck!
climb
Posts: 170
Joined: Sun Dec 29, 2019 10:09 pm
Contact:

Re: Why don't you contribute to the propeciahelp survey?

Unread post by climb »

The survey is actually really well put together.

Everyone should be filing a RXISK report
https://rxisk.org/report-a-drug-side-effect-2/

and completing the survey.

these kind of databases would surely be helpful for prospective researchers if enough people complete them.
User avatar
dann888
Posts: 101
Joined: Sat Jan 13, 2018 2:35 am
Contact:

Re: Why don't you contribute to the propeciahelp survey?

Unread post by dann888 »

Please go to below link and complete the survey. Still 4 need to achieve the target.

https://forum.propeciahelp.com/
REVOLUTIONIZE
Posts: 33
Joined: Fri Sep 06, 2019 9:29 am
Contact:

Re: Why don't you contribute to the propeciahelp survey?

Unread post by REVOLUTIONIZE »

raven100 wrote: Tue Jun 04, 2019 7:18 am Stuff like this is a reminder as to just how rare PSSD is, you get subreddits for every rare health issue under the sun that regularly have 10k + subscribers, you have 10000 YouTube channels with 1M+ subscribers. SSRIs are the most prescribed drugs amongst young people who you'd expect to more readily join internet forums yet the largest PSSD forum has 50 active members and can't get together 2 dozen people to fill out a form.
Yes, but few people want to talk about their sexual issues. It's estimated that 150 million men suffer ED worldwide and there is a subreddit created for those people that only has 3.4k members. As family doctors are not aware of PSSD, they simply label PSSD as a mental problem.
pterostilbene
Posts: 29
Joined: Tue Apr 07, 2020 9:30 am

Re: Why don't you contribute to the propeciahelp survey?

Unread post by pterostilbene »

Why I don't contribute? It's terrible. Having to explain it much, and then it still being unobvious, just shows it's badly implemented and structured, even if more explanations trying to convince one of how "easy" it is are forthcoming (and all links still just lead to the main site instead of the survey... that's funny). One can always see the result up top, but it's almost buffoonish to then not give clear access to the thing.
And by the way, an "FAQ" (which swamps one with lots of extraneous content) shouldn't contain the details of how to finish the quest of finding that survey. An FAQ is for additional questions about a thing, not the "gateway" to the thing.
In short: it's badly done, it's not likely many coming across it are going to fill it out immediately, and after leaving, ever.
And having to "introduce" oneself before it, separately, like writing a letter with most of the same things, and then waiting for it? No.

That aside, I don't believe at all that it matters. There is no reason why it should matter, how it would influence any outside party.
User avatar
TalkingAnt
Posts: 255
Joined: Tue Jan 27, 2015 9:04 pm
Contact:

Re: Why don't you contribute to the propeciahelp survey?

Unread post by TalkingAnt »

Pterostilben, what a tragedy you have described. It’s quite amazing anyone has suffered through completing the survey. I mean can you imagine the mental anguish people went through performing those mouse clicks and reading mildly disorganized information? PSSD is nothing compared to spending 2 hours navigating this website.

In all seriousness, do you have a better idea how to gather data on PSSD symptoms? And if so, are you willing to put in months worth of work building a website and then further months doing data analysis? Or is the best you can offer the community a few disgruntled forum posts?

Claiming the survey data doesn’t matter is completely writing off the possibility that we get interesting data from it, or that it encourages doctors and scientists to recognize our condition. If everyone had your defeatist attitude, there would be no forum, no community, and no trial and error. So lighten up, recognize the possible benefits here, and be encouraging to this community.

We as a community should take every opportunity we get. That includes taking mildly inconvenient surveys that may lead to enlightening data analysis and/or recognition.
Cured | PSSD 2012-2020 | Log thread
pterostilbene
Posts: 29
Joined: Tue Apr 07, 2020 9:30 am

Re: Why don't you contribute to the propeciahelp survey?

Unread post by pterostilbene »

It's terribly designed and I don't leave something uncriticized just because of their ego and they "did it themselves" (which is what this is always about). I criticize it, and I stand by it, it is not merely a selfish, petty thing, but valid and useful for how to do things better (even if I don't develop a plan myself, although some things are incredibly obvious), unlike guys like that wanting it to be uncriticized.
And I know it is the biggest trend on the internet to kiss each other's butt endlessly and smear smarm all over each other that it just makes one cringe, and wait for someone to make any critical, rational remark to immediately snap on him (at best in groups) with a smug, toxic manner. This is the internet in a nutshell and all modern ideology in a nutshell. No rational criticism of anything (eeeeek!! The worst thing ever!), just group echo chambers, conventionalism and endless self-gratulation, which in turn allows pointless, arbitrary (non-rational) hate of anything and bullying of anyone. Pure hypocrisy and "attitude". (Just look at DT. And this is why "troll" at the same time became the most popular term to style oneself with, and only gets applied negatively, not to deliberate "trolls" [perhaps to those who get trolled!], but to those who fall outside of the community echo-chamber and allowed conventions, or "disturb" them with a little criticsm.)

I don't think that survey is important, and its bad design will remain as a testament to some hobby developer's ego.


And demanding someone to write a pretty "letter" about themselves (and wait) just to be allowed to do a survey is indeed a ridiculous imposition, which you may mock as "tragedy" or whatever, but still makes this whole thing a whole lot more unlikely to get particiaption.
User avatar
TalkingAnt
Posts: 255
Joined: Tue Jan 27, 2015 9:04 pm
Contact:

Re: Why don't you contribute to the propeciahelp survey?

Unread post by TalkingAnt »

Construction criticism is always welcome. But your writing style implies that you are deeply upset about the design choices of their website, which in the grand scheme of PSSD and PFS is a minor inconvenience . And as I said, I highly disagree that the survey is worthless. I’m not sure what your intentions are by appearing so upset about a website, but perhaps you should take a step back and reevaluate your priorities in life and ask yourself if this is really a problem you should get upset about.

You are free to not do the survey. But I’m not sure what you are trying to achieve by convincing others to not do the survey. If you have finished writing your criticism then perhaps leave this thread for other members who are actually interested in contributing to a community project.
Cured | PSSD 2012-2020 | Log thread
Post Reply

Who is online

Users browsing this forum: No registered users and 5 guests