Last chance to participate in the survey

[borax]

Hello everyone,

We will soon no longer be accepting responses to the survey, as we have to close it up so that the data can be analyzed, and potentially published. If you are a PFS, PSSD, or PAS patient, the coming weeks are your last chance to participate in the survey, and your contribution would be immensely helpful. The more contributions we have, the more powerful the dataset is. This is one easy way that you can contribute towards solving this issue, and I urge you to please take this step. Every useful step we take is one step closer to the resolution of this.

Also, if you see another member who posts frequently, has been off the drug for 3 months without a resolution of symptoms, and hasn’t taken the survey, please take the liberty to send them a gentle reminder to do so.

Our sincere thanks to everyone who has contributed to this unprecedented project.

If you have any queries, please refer to this: Post-Drug Syndrome Survey FAQ. Survey NOW LIVE - Please Participate

[Greek]

@borax

Also, if you see another member who posts frequently, has been off the drug for 3 months without a resolution of symptoms, and hasn’t taken the survey, please take the liberty to send them a gentle reminder to do so.

By the way the way to spot this is no blue tick on your avatar/ profile pic = no survey.

So, now you know who to gently remind and if you don’t have a tick it might mean you’ve started but not finished, so please take another look!

[axolotl]

Hey guys, as Borax has said - thank you to everyone who has contributed to what is the biggest and deepest dataset in the world by a large margin on this condition.

When the survey concludes in a few weeks, we will also be temporarily taking down the test result reporting system and the notable reactions reporting system that are currently additional surveys you can take after finishing the post-drug syndrome survey.

These additional systems will be brought back after a planned server upgrade shortly after, and at that time be opened to all members of the forum to use (as currently patients have to submit their full survey to access these).

In the meantime, if you have completed the post-drug syndrome survey: You can reach these additional systems to report your test results and significant reactions by clicking the graph icon in the top right of the forum and using the links below the main survey link.

Those unfamiliar can visit the following topic for a guide on how to use this system:

Guide to using new feature: Clinical Tests Reporting Form

Hi guys, We are pleased to announce a system for patients to report the results of their clinical tests. This provides an easy way to collect and ultimately present aggregate and individual test results. This topic is to explain how it works and how to use it. The graph icon at the top right of the forum (when viewed on a desktop or laptop computer) will provide you with a selection of links to all out patient data systems, including the Post-Drug Syndrome Survey, and the new Therapeutic Outco…

[Sugarhouse]

Hi all,

I’m bumping this thread to bang the drum once more for survey completions.

Over the last few days, you may have noticed me on many threads asking people to take the survey, as it is vitally important for research. No matter your belief about home remedies, self-experimentation, theories about mechanistic action, whatever, everyone should complete the survey.

Why?

Because it is the first chance, ever, to accurately and objectively record the symptom profile of the PFS patient community. This data is invaluable for increasing clinical appreciation and awareness of our condition. Not only is that important for future research, but also for increasing acceptance of our condition by both the medical and mainstream community.

I know it seems daunting when you open it, but it’s really not. It takes 30-45 minutes and you’ll never have to hear me, or any other moderator, bug you again.

This forum has thousands of registrations, and many active members, yet since launching the survey just over 2 years ago, we’ve only had 270 completions. Meanwhile, countless threads have been created about possible remedies, theories and other ideas.

I ask every member of the forum who hasn’t, to please take some time in the next 2 weeks to complete the survey.

Best,
Mitch

[Scotsman]

If any guy is reading this and you haven’t completed the survey, then you should divert your forum time until you get this in the bag. As Sugarhouse says, the clock is ticking. If you can find the time each day to check in here, you can find the time to complete the survey. I believe that you don’t have to complete it all at once, so even if you devote the time you normally spend here to doing the survey for a few days then you could do it that way. It’s a very small ask for all of us. Consider it community service. Let’s get to that 300 goal.

[Sugarhouse]

Thank you to our new survey participants! We’re at 272 overnight, let’s try get another 5 this week.

[Sugarhouse]

Hi all,

Bumping this important topic again - we are at 273 completions! This is an amazing achievement considering we were only at about 260 three weeks ago. Thank you to all our new participants.

I have been annoyingly active on some threads today, tagging folks who may have been active for some time who haven’t completed the survey, or new folks who may not realise it exists. This amounts to 15 new participants, and if every one participated, we would get to 288 completions which would be outstanding.

I understand it takes a bit of time, and is not obvious how to access and complete. That’s why I’ve created a short video here, which you can use to guide you through the steps.

Let’s aim to get to 288 in the next week!

Best,
Mitch

[Sugarhouse]

Thanks to our latest participants @Toughluck24 @PeppermintPadthai and @5-alpha-victim we’ll be at 275 shortly. Fantastic effort guys, truly appreciated.