Hi @Former - thanks, yes you had not yet received one due to inactivity. You will be sent an email by the system in the next six hours. Let us know if you don’t get it.
Regarding the 23 and me project - please see the link below here for instructions on submission. Thank you very much.
Hi new user here, but not to the syndrome. Accutane user. Please send me a link.
Thanks and welcome @Throwmeinthetrash - the system will send you a unique invite within the next six hours.
Just completed. Thanks
How can I update survey?
I don’t have a link, can someone forward
Hi @PAS,
Invites are uniquely tied to members and sent via an automated system. It may have gone to your spam folder, so I have now issued a reminder email. Please check your spam if you do not see it, and let me know if you still haven’t received it.
Thanks
Thanks for participating! We are badly in need of PAS sufferers completing the survey.
You never have to thank me. You’re the ones doing something actively.
On the other hand, I still haven’t received anything.
Hi @PAS, sorry to hear. Unfortunately problems on the email providers side are out of our control. I can see it was sent successfully twice. As such, please check your private messages regarding your unique invite.
Thanks
We have now restored (hopefully all) the data from the old version of the survey we had to take offline due to a bug in the software.
Below is the current status of responses we have in the database. If you completed the survey, please check if you are on the list in the first column. All responses which are not completed yet are in the second column of the list.
If anyone did not get the link, let us know. We will provide it to you via PM if required.
Thanks everyone.
| Completed | In Progress |
|---|---|
| 2981 | absurdmistake |
| ac3c | alteredlife |
| aeroengr | asia |
| aerozsmith | avalanche |
| anacleta | aydin |
| axolotl | bearof17 |
| brasilianguy | bluer |
| burt_kocain | borax |
| damon | cement |
| daviddoff | cyclope |
| dubya_b | dattem |
| fallout | davek22 |
| finfina | devolution |
| hkboy | dknighten |
| hope_want | dumdumdum |
| hrihor | fuckpropecia |
| ice | go_faster_sonic |
| jimbotlimp46 | hardraf |
| jinstewart | ihatefin |
| jm88 | jhdiaz |
| kan | jmw77 |
| kazuyaa | juddbe |
| keepinghard | lakehouse |
| knifli | lbogle47 |
| len | lostinaustin |
| limbo | mcbbould |
| lw77 | mcibofh |
| mark2012 | nate99 |
| marlena454 | newyorker |
| matys83 | notna |
| merrychristmas | ohmygod88 |
| milando97 | pas |
| mrerdem | propecia123 |
| ncsugrad | r129 |
| northern_star | ryry2310 |
| orthogs | scott.h |
| pete | smallballsbighope |
| pete1989 | sunny11 |
| pvdl | th0r_nike |
| razac | tim1911 |
| rb26dett | vik1990 |
| scaredguy | zodiacs |
| scotsman | |
| slick1 | |
| snake | |
| stopfin | |
| talkingant | |
| throwmeinthetrash | |
| trav | |
| tzinkman | |
| ukguy82 | |
| victorcillo | |
| wings |
Nice! That looks to be around 100 respondents so far, as long as every work in progress is completed.
This is only 100 presons compare to 5000 users. Its only 2%. I suppose it happens because surveys are landing in spam.
Hi @matys83, not all users have received an invite - only users active since the forum relaunch who the system has registered as being trust level 1 or above. Returning users or new users are automatically assigned TL1 after short activity on the forum. This currently entails about 500 invites so it’s a very encouraging response rate so early, as this project is running indefinitely and it’s quite a long survey to complete. Awareness is of course a key factor and getting the word out is helpful and important for those in contact with other patients who haven’t yet taken it.
Thank for answer axolotl. It sounds good
I completed the steps - can you send me a link for the survey? I never got one. Thanks @axolotl
Hi I’m new - female who took Isotretinoin for 9 months and has chronically low testosterone/DHT and pelvic pain. I would like to take the survey please. Thanks!
Welcome, @Ignitethelight, can you fill out a member story?
I’m not sure what the participation threshold that triggers an invitation to the survey is, but that would be a great way of getting the ball rolling.
See the first post in this topic for more info, thanks!
Hi @johnnyfin - thanks, the system has now issued a reminded email. Please check your email folders including your spam folder and let me know if you still haven’t received it.
Hi and welcome @Ignitethelight - you should receive an email with your personal invite to the survey within the next six hours. As @Greek mentions, feel free to share your story if you’d like here on the forum.