Post-Drug Patient Survey Launched at Propeciahelp

Dubbya_B

Member
Staff member
Jun 27, 2018
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#1
A new post-drug patient survey has launched on propeciahelp.com.

https://forum.propeciahelp.com/t/po...-faq-survey-now-live-please-participate/34482

This survey system was created to help characterize the condition(s) that have come to be called PFS, PAS, and PSSD, along with several other persistent syndromes related to various substances. The survey contains validated questionnaires related to sexual dysfunction, psychological parameters, general quality of life, and more focused questions related specifically to post-drug syndromes. It also allows a member to upload lab tests anonymously and share their results from treatment attempts in a way that can be collated uniformly.

It is our hope that the information generated by this survey will help to define PFS, PAS, and PSSD, identify our overlap in symptomatic profile, and provide a useful tool for any researchers looking for data.
 
Likes: flynn

Dubbya_B

Member
Staff member
Jun 27, 2018
39
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8
USA
#3
You're welcome Flynn!

Anyone reading this, please participate in the survey! Apparently, there have been quite a few submissions from PFS, PSSD, and post-Lupron patients, but for some reason, very few PAS patients have completed the survey.
 

Dubbya_B

Member
Staff member
Jun 27, 2018
39
24
8
USA
#4
Results are now available for viewing here.

The report is regenerated daily as surveys are completed. There will be more reports coming in the future to describe these conditions in greater detail. Stay tuned.

Not a surprise that there appears to be a strong overlap in the main symptoms and their level of severity for PAS, PFS, and PSSD, indicative of a single condition. They turned out to be even more similar than expected, which may be due to a standardized survey removing the bias toward discussing certain side effects within each community of patients. For instance, PSSD was considered to only include sexual symptoms until recently.

The bad news is that the response from the post-Lupron community has been negligable to the point where results from those participants were not included, and participation from the PAS community has been very poor considering how many people have taken the drug.

We need at least 50 PAS respondents to yield results with sufficient statistical power to be worthwhile.

Can anyone who regularly visits this site and has yet to complete the symptoms survey please explain why they have chosen to not participate?

Thanks.
 
Last edited:

flynn

Administrator
Staff member
Feb 28, 2018
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#5
Results are now available for viewing here.

The report is regenerated daily as surveys are completed. There will be more reports coming in the future to describe these conditions in greater detail. Stay tuned.

Not a surprise that there appears to be a strong overlap in the main symptoms and their level of severity for PAS, PFS, and PSSD, indicative of a single condition. They turned out to be even more similar than expected, which may be due to a standardized survey removing the bias toward discussing certain side effects within each community of patients. For instance, PSSD was considered to only include sexual symptoms until recently.

The bad new is that the response from the post-Lupron community has been negligable to the point where results from those participants were not included, and participation from the PAS community has been very poor considering how many people have taken the drug.

We need at least 50 PAS respondents to yield results with sufficient statistical power to be worthwhile.

Can anyone who regularly visits this site and has yet to complete the symptoms survey please explain why they have chosen to not participate?

Thanks.

Please everybody complete this survey!!
 
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Dubbya_B

Member
Staff member
Jun 27, 2018
39
24
8
USA
#6
So far, there have only been 21 submissions from PAS patients. There are regularly five or more lurkers on this forum.

If you have been sitting on the sidelines suffering from this condition in silence, please step-up and take action in some way!

At this time PAS is practically untreatable, permanent, and unrecognized. We are trying to change that, but we need help.

This doom is no way for someone to live their life but that's how it is going to end for us at this rate.
 
Likes: shivgeorge