Two simple positive actions: complete the survey and report your symptoms

Hi all,

As I was browsing the forum today for a related piece of PFS Network work, I noticed a lot of new patients have not completed our patient survey. I also came across a thread from 2020 about Dr Irwig’s post-marketing case series on finasteride and suicide, where patients shared old tweets from clinicians dismissing the sample size and importance of the study.

In that thread was a fantastic response from @axolotl about the importance of completing the patient survey.

When patients express clearly their doctors do not properly clinically record their situation, how could the numbers game they are hoping to play ever be useful? We know from the patients themselves and their families that these cases are incompletely recorded, so we cant get statistical power that way. The disease is too rare, and our last suicide - amongst many others - was not clinically recorded.

As Prof Irwig mentioned in his paper, a disease of this rarity reaching signal in a placebo controlled trial would require a trial of a scale and duration that could never be achieved. A rarity in predisposition in line with a well-recognised genetic andrologic disease - say above one in 350,000 - wouldn’t make three cases in a million consumers. We know PFS is more frequent than that, but it is still extremely rare.

Therefore, when the clinical experience of our patients is to generally be entirely dismissed (180 surveyed reveals extreme dissatisfaction denoting a dangerous situation per Short Assessment of Patient Satisfaction), what on earth are we meant to do? Die quietly while a few urologists declare the numbers not very strong, carefully mentioning only the symptoms that aren’t undeniably physiological? It is absolutely risible in 2020. I truly wonder how they would feel if it were them, or their child, suffering this horrendous disease and they saw such indifference. Anyone outside of this sorry situation would hope such professionals to be there to protect and help young people who had their lives snatched away by clinical ignorance.

For those wondering why we bang on about numbers in the survey, here’s the reason. We need as strong data as we can get, especially given the inherent biases of purposive non-random sampling.

This kind of dismissal is also possible due to underreporting of patient symptoms and adverse events. To date, there are still less than 20,000 total FDA AE reports, which includes on-drug side effects. If you are unsure how to report your symptoms, or your clinician will not report them for you, please check out our new user guide which provides instructions. You will also find the instructions to complete the survey there.

Every patient can make a difference in turning the tide in this condition, and the resistance we experience from both the medical community and general public. While we work to get research underway, these two simple actions, which take a few hours, can make a massive difference for the future of our condition.

Thank you,


Bumping this thread as I’m seeing a lot of new users with no blue ticks!