About the PFS, PAS, PSSD Survey

Dear fellow sufferers,

it’s great that the admins have the survey running.

  • Are there already any results?
  • How far are the admins with finding a scientist to publish the results, or publishing themselves?
  • Do the admins have a statistician involved?
  • Are there any efforts trying to validate the survey?
  • Are there any efforts to work on improvements of the survey that could be used to differentiate between PFS, PAS, PSSD and depression and other causes of ED?
  • If so will the questionnaire be offered to scientists or to screen for eligible participants for studies? Or even for a patients registry?

I am curious. Thanks!

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Results are available through the links in this topic:

Or through the “survey basics” category:
https://forum.propeciahelp.com/c/projects/survey-basics/49

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The survey results have already helped to catch the interest of scientists the admins were in contact with. Unfortunately, AFAIK, one of them fell-through and one seems to have cut contact after covid-19 became the center of attention for their research center. One prospect is pending further communication. Anyways, no point in counting chickens before they are hatched, but the survey has been helpful so far. I don’t think there are any plans to publish the results officially. If a scientist wanted to include them as part of a justification of their research, that would be up to them.

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No, but we were/are looking for someone from the post-drug community with expertise in statistical analysis.

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Not quite sure what you mean, but part of the survey does consist of validated questionnaires that are commonly used in research. I think it would take too much time and effort to give the “unvalidated” part of the survey to case/control groups in an effort to validate it as a type of diagnostic tool.

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At least as far as PFS, PAS, and PSSD/post-AD/post-SSRI are concerned, the staff spent quite a bit of time making sure as many symptoms commonly described by patients in these groups as possible were included in the survey.

There was some criticism that PSSD symptoms weren’t properly represented in the survey, but I honestly don’t know what those people are smoking. Maybe they don’t think people who identify as “PSSD” should have to answer questions pertaining to “physical” symptoms, because they don’t consider them relevant to a syndrome with “sexual dysfunction” in its acronym? What on earth is there to gain from not having a comprehensive symptom profile.

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Thanks a lot.

I think validation of the survey as a diagnostic tool would be great. But I am not sure if it needs to be overhauled to better filter out differential diagnostics such as depression and ED for other causes. I am pretty confident that the depression in PFS and PSSD is slightly different from classical depression. Especially in terms of timeline, fluctuation and blunted emotions. At this moment the survey contains some suggestive phrasings and questions that not well differentiate from depression for other causes. It would be great to finally have a diagnostic tool for the community. This survey is a great leap forward.
Unfortunately, at this moment we don’t know who really has PFS, PSSD and PAS and who has something different. This not only makes the data in recovery stories dirty but also in the 23andme datasets and possibly even in clinical trials undergone by Melcangi. Therefore a tool that is validated (on as many of the dimensions accuracy, precision, reliability, reproducibility) would be of great value to achieve cleaner data and better study results.

I am in touch with a scientist who is very interested in the results of the survey: “These questionnaires could provide quite useful information and publishable information! …and more importantly, to increase visibility and awareness about PFS/PSSD”…
He is editor of a few endocrinology journals and proposes to draft one special issue about PFS/PSSD to “…rise the visibility to this growing health issue.”

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Excellent news!

I’ll be in contact in the near future regarding possible collaboration with this scientist you speak of.

The emotional blunting common with this syndrome is unlike any description of depression I am familiar with and the negligible levels of key neurosteroids observed in the Melcagni/Milan line of PFS research also seems indicative of something more profound than typical depression. …At least that’s my view of it.

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