The PEF Project

Form Open Below!

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Form Open Below! –

FAQs

  • PSSD, PFS, and PAS are conditions that modern medicine has caused and has largely ignored. So far, there are no standardized treatments. However, we at PEF believe that it does not have to be this way.

    Progress has been slow in part because good data doesn't exist. Communities are fragmented across forums, symptoms are broad, phenotypes vary widely, and our Recovery Database shows that treatments are extremely diverse.

    Our project is an attempt to fix that. 

    Every response you submit becomes part of a structured, open dataset that researchers, data scientists, and physicians anywhere in the world can access and analyze. You don't need to be a scientist to contribute to science — you just need to share your experience honestly. The more people participate, the more statistically meaningful the data becomes, and the better our chances of identifying effective treatments.

  • Kaggle, with over 15 million registered users, is the world's largest community of data scientists. It hosts datasets that researchers and analysts can download, study, and build models on.

    For those who aren't familiar with data science, it is the study of extracting meaning from data using applied statistics and coding. It is the discipline behind products you use every day like ChatGPT and Claude, and is also used to create algorithms like Harvard’s TxGNN which maps drugs to rare conditions with precision.

    Data science matters because these conditions are complex, diverse and multifactorial. No single (known) biomarker or symptom defines them. Data scientists can help uncover patterns in PSSD, PFS, and other post-exposure syndromes that are otherwise missed by clinicians.

    The more data collected, the better. A dataset of 500 detailed, well-structured patient responses is our current goal. It is something a research team can actually work with. A dataset of 5,000 is something that could change the field.

  • Your responses will be compiled into an anonymized dataset and published openly on Kaggle. No personal information will be published.

    The goal is to not only make this data as accessible as possible for anyone who wants to study it– PhD students, physicians, or passersby– but also bring awareness and spotlight your condition(s).

    Identifying information is optional, and will be handled carefully. Minimal personal identifying information is taken. The dataset exists solely to accelerate research and visibility.

  • The survey has four sections: background information (medical and demographic), symptoms, biomarkers, and attempted interventions. It is designed to accommodate whatever level of detail you're able to provide. You do not need to have every test result, a formal diagnosis, or documentation of any kind to participate. Your self-reported experience is valuable on its own.

    That being said, the more detail you can provide, the more useful your response becomes to researchers. If you have blood work, hormone panels, SFN biopsies, gut microbiome reports, or antibody results on hand, we encourage you to include them. Official confirmation of any treatment, diagnosis, or intervention also helps legitimize the dataset for physicians and scientists who may otherwise be skeptical of self-reported data.

    The survey is open to anyone suffering from:

    • PSSD (Post-SSRI Sexual Dysfunction)

    • PFS (Post-Finasteride Syndrome)

    • PAS (Post-Accutane/Isotretinoin Syndrome)

    • Post-Lion's Mane Syndrome

    • Post-Ashwagandha Syndrome

    • Dual diagnoses (PSSD + PFS, PAS + PSSD, etc.)

    • Those uncertain of their trigger, under Undetermined Post-Exposure Phenotype

    The survey takes approximately 15–45 minutes to complete depending on how much information you have available.

The PES Project Official Form