Post-Drug Syndrome Survey FAQ. Survey NOW LIVE - Please Participate

[Dknighten]

If anyone stricken by PFS is bothered by taking an hour to complete the survey, they probably need to re-evaluate a few things.

[pvdl]

Agreed. Now axo gave us another list but I think the other one I just did was quite long as well and only 7 days old.

[lakehouse]

yeah finished it a few weeks ago

[lakehouse]

“kingdick” lololololololol

someone tell @kingdick he has to finish the survey if he wants to keep his username

[Northern_Star]

One more to go to 100!

But please let’s not forget that this is a minimum requirement, the higher the number of participants the more powerful the data. Even when we get to 100, it’s still worth it to accumulate more data. So let’s not stop after 100.

[jinstewart]

Can I edit my survey once submitted? Things have improved a bit since then, which I’d like to include if I could.

If not no probs.

[axolotl]

Hi @jinstewart,

Please see the FAQ answer (quoted below). As with all medical related surveys it’s important to finalise the response for any analysis. As the time frame of patients is three months to over a decade in, the result is a snapshot at that time. Many patients obviously improve or sadly worsen and unfortunately to ensure data integrity we can’t make it so people continually change their responses. It is often important for good practice surveying that participants aren’t revisionist in their responses.

If PFS was accurately acknowledged fully and accurately already and this was solely an internal project for members to reference then we would, but as the medical establishment, and even scientists with pet theories, are not familiar with or correctly acknowledging the situation, it’s important pilot data we have endeavoured to make as credible as possible.

Best,

Axo

@axolotl

Can I update my submitted survey responses?

For the purposes of data integrity, no - the survey will not be editable. However, a second survey that will be accessible directly through the forum will allow the reporting of test results, therapeutic outcomes and notable responses. This was originally in the survey but had to be separated for technical reasons. This second survey will be continually editable and you may update with new notable responses, therapy outcomes or test results.

[Aydin]

Yes i finished

[Lostinaustin]

Just finished, a little worried about how it asks 4 weeks before stopping and 3 months after using propecia because I don’t remember anything from that time (about 7 years now)

[pvdl]

I have noticed that the banner now only shows the number of people who completed the survey (for finasteride). I think its better to just adjust the goal from 100 to 150 or 200. It looks better and its nice to have a goal in mind.

[MatchaTea]

Hello yup I finished it a few days ago

[MatchaTea]

Wow ongoing issues after 7 years off??? I’m going on one year and it’s been really hard. My body is not the same but I wonder if it truly gets better with time or do we learn how to cope with reality

[Lostinaustin]

It varies for everybody, but for me I have just learned to cope

[alteredlife]

Yes, I did it.

[propecia123]

Yeah completed it too a while back

[pvdl]

@axolotl why not set new goal for finasteride portion of survey? Bump it up to 150?

[axolotl]

Because it’s easier to add things to my to do list than to get through my to do list

[voice]

Any thoughts on a graph showing recoveries what worked with people to cure certain side effects or all side effects. You guys have done such an awesome job on the survey just throwing out an idea.

[axolotl]

Hi @voice,

Please see this answer in the FAQ:

@axolotl

MrPipe, a forum user, told me to follow MrPipe’s cleansing protocol v4.0 and it [helped/worsened] my symptoms. Can I report this?

Yes, you will be able to soon. There will soon be a second survey accessible through the forum that will allow patients to report therapeutic outcomes, as well as notable responses to things not taken for therapeutic relief of their post-drug symptoms. This will also contain a reporting system for test results, and be continually editable should you have experience with a new therapy or recieve a new test result.

This was originally in the survey, and exists fully functionally. However, this had to be separated, as it was causing technical problems with the underlying software owing to the size and complexity of the survey.

The system you mention is made and works well, and importantly can collect test results in a structured way. Sadly it’s not integrated yet. How the main survey works is by what is a little AI essentially continually monitoring who has and hasn’t got invites (checking they have posted, aren’t banned etc) and issuing them where needed. We need to work with a volunteer behind the scenes to change this behaviour to be issuing two (one for the main survey and one for this second survey) and managing both, as well as adding people who have completed the main survey to a special group. It’s not an enormous task (for them) but it is not trivial. This is just a matter of spare time for them, when they can. Hopefully it wont be too long.

[Go_Faster_Sonic]

survey completed.
anyway, i think that a survey or an analysis on what worked to reverse our condition in other users would be great (and useful). a sort of review.