Same fore many questions but I have try to make an average.
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Hi @Tomas,
The survey was constructed according to good practice standards and 4 week time frames are highly translatable to a number of scientifically validated scales, some of which are included in the survey. As many symptoms anecdotally onset or intensified in the weeks after cessation this time frame was added to capture this common experience. However, standardisation can never account perfectly for every individual experience in any survey. To accommodate users who feel they would like to add pertinent information related to their case, we included text boxes for elaboration at the end of each section.
In your situation, as a specific question in the initial sections asks about how you were feeling between cessation and worsening and you crashed three or four weeks after, it seems to me you could therefore accurately record your condition at the time of your crash in the 4 week after time frame while still having recorded feeling great before hand via the early question regarding this.
Best
@kate220220 cannot access the survey, please help her @Northern_Star @Greek @axolotl @Dubya_B
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Hi @stephane1,
Please could @kate220220 post a topic introducing herself and her situation in the member stories category? The system will issue a personal invite by email shortly after this, and at that point her survey will be accessible either through the link emailed to her or the bar graph icon at the top of the forum when browsing on a desktop or laptop computer.
Best
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Hey, I found this survey on the PSSD forum, if it’s still active I’d like to participate.
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Welcome!
This topic is for you:
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Sorry but i do think that the crash period is really important, and there is no way to do an averange between sexual desire 12 out of 10 before crashing and -10 after…so please let me know what to specify knowing that the crash has no interest here and many people will get confused: before or after crash? Thankss.
Just been on the PSSD forum. Are they supporting the survey? I can’t find a sticky on the forum asking people to fill it in.
There is a thread that is bumped every couple of days.
Sorry I mean on the PSSD forum, I can’t find a thread on there for the survey.
So am I 
. I am one of a few people who bump the thread on pssdforum.com. They have a lot of categories, so it’s a bit of work to keep the thread visible.
Ahh cool 
good to see they are onboard.
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Do you have links to the other groups? I will join and chase them for the survey. Already joined PSSD
I have been sending private messages to historical users of this forum with this text:
Hi (username)!
Have you filled out the survey designed by awor and axolotl about your experience with post-finasteride syndrome? We need at least 500 people to fill it out for it to have some relevance for medical research. Until now 120 people have finished it.
It will only take you 15-20 minutes and if you stop in the middle of the process it can be saved for later.
Post-Drug Syndrome Survey FAQ. Survey NOW LIVE - Please Participate General Discussion
Hello everyone, Please participate in a Post-Drug Syndrome Survey We are requesting the participation of patients who have suffered persistent health damage following use and discontinuation of certain drugs and substances with endocrine-disruptive properties (listed below). NOTE: Current results can be found HERE. Members can access their personal survey when logged in via the bar graph icon at the top right of the page when browsing on a desktop or laptop computer: [image] New members can…
Thanks in advance and sorry for any inconvenience.
Kan
The users that I have contacted are basically the ones that have had more activity in the past. I checked the user list (https://forum.propeciahelp.com/u?order=post_count&period=all) and ordered it from the people that have written more replies to the people that have written less replies, so the users that have been more active throughout the years appear on top of the list.
I have messaged the top repliers of all time until @braziliandude, except those who I know that have already filled out the survey. If anyone wants to continue from there, feel free to copy the text of the message. But in case someone continues sending messages to the next members of the list, make sure to let others know by replying this topic, just to avoid sending two messages to the same users.
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That’s great @kan, it’s worth pointing out that everyone got an email when the survey went live so they should have been informed.
Soon, people who have taken the survey will have a badge on their profile, so we can easily see and ask people posting here who haven’t yet taken the survey to do so.
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Hey guys, sorry for disappearing. I finished the survey. Much love and I appreciate the reminders.
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Great, thank you, tenacity! Please, ask your fellow PSSD sufferers to participate as well. The more participants, the more powerful is our data.
Also, big thank you to all those who keep reminding people, keep bumping threads and help people on the way. It’s good to see that many are pulling in the same direction. Keep it up!
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I feel like through the years we are losing the connection with people that was very active in the past. And obviously it is very normal that they want to forget about many of the things they went through and “disappear”, but we need to find a way to make people available again when they are needed, even if it is only to complete a survey or to participate in something once a year or whenever is needed.
Regarding this, I think this community has always been scared of collecting some personal data (something which is logical bearing in mind what we are talking about in this forum), but if things are done correctly, there would be no need to worry about anything. For example, if we had phone numbers of the members this would facilitate things a lot. Many people (myself included) have had problems with e-mails and many don’t even log in the forum anymore.
I am not saying that introducing one’s phone number should be mandatory when registering to the forum but maybe an optional box to write the phone number could be an option.
Just an idea, maybe there are other ways to “improve user’s loyalty” that can help us. We are more than 5,000 people in this forum and less than 200 have filled out the survey. We need to find a way to improve new users “loyalty”, as it is not the same to have 200 people to count with to having 5,000. Any ideas?
Yes, I agree. I don’t think asking for a phone number up front would (as you say) help with registrations, but a sense of community responsibility would help immeasurably. I only posted because I wanted you to know that sending a pm, at best (if people have emails switched on) will generate an email that may or may not be read, much as the survey mail out will have done.
On topic, I cannot understand the attitude of people who get better and disappear, but it seems that I’m in a minority, as many people say that they would do that very thing.
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