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@jenncanvasser Hi, I am considering writing a LOI for a @PCORI grant regarding two post-drug syndromes: post-finasteride syndrome and post-SSRI sexual dysfunction. These are not widely recognized by the medical community and are considered "controversial."
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When urologists, dermatologists, endocrinologists and psychiatrists hear patient reports of lasting symptoms after discontinuing finasteride or SSRIs, they often resort to psychological explanations, e.g. "It& #39;s in your head."
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This is demoralizing and counterproductive. Symptoms often include loss of sexual desire & function, and may include physical, cognitive and neuropsychiatric symptoms.
Likely more young men are taking these drugs with the rise of online pharmacies selling finasteride. 3/
Likely more young men are taking these drugs with the rise of online pharmacies selling finasteride. 3/
The syndromes appear to be irreversible. Everything under the sun has been tried as treatment, it seems. There are some hypotheses including disruption of the neuroendocrine system. 4/
The whole situation, from the lack of informed consent to doctors& #39; widespread dismissal of patient experience, is the *opposite* of patient-centered care. It& #39;s like dismissing people with ME/CFS as malingerers. Change is needed on many levels. There& #39;s a lot of work to do. 5/
My question is, will you consider research about disorders whose status in the medical community is contested?
An article on post-finasteride syndrome:
https://www.sciencedirect.com/science/article/pii/S235228951930061X?via%3Dihub
On">https://www.sciencedirect.com/science/a... post-SSRI sexual dysfunction:
https://pubmed.ncbi.nlm.nih.gov/28778697/
6/">https://pubmed.ncbi.nlm.nih.gov/28778697/...
An article on post-finasteride syndrome:
https://www.sciencedirect.com/science/article/pii/S235228951930061X?via%3Dihub
On">https://www.sciencedirect.com/science/a... post-SSRI sexual dysfunction:
https://pubmed.ncbi.nlm.nih.gov/28778697/
6/">https://pubmed.ncbi.nlm.nih.gov/28778697/...
P.S. I am working with a small group of four other engaged patients on attracting researchers to this topic. We have connected with an American professor/researcher who has launched a study of PSSD. She is clearly patient-centered in her approach. I& #39;ve thought of approaching her.
@PCORI could someone respond, or whom should I contact at your organization? Start at the top of this thread.
