People need a new hope to direct their energy towards. The new hope should be the survey.
We should now be encouraging people to take the survey and no longer leave this to mods etc.
This should become a new culture. Anyone who has been here over 3 months with persistent issues I assume should be completing the survey.
Typically these guys come here occasionally when they have a worry. They post that worry on the forum and expect the community to give them an answer because they are too busy with their own lives to find it on the forum. The person gets their answer from the worker bees then goes back to their life. Going the gym, dating girls, drinks with the guys, chasing promotion at work etc. So the mindset is I’m OK Jack I don’t need to fill in the survey, life ain’t really that bad. However when I wake up one morning without morning wood or feel off due to eating something different you can bet your last dollar I’m coming to this forum looking for answers. You can bet I will impart my worries on you and say how awful life is today without my morning erection.
One of the guys on Greeks survey list started a thread on their condition that has over 200 replies. Now they are feeling better they rarely come here and can’t be bothered to repay all the people who helped them by completing the survey. This is the type of selfish people that we are dealing with. When I’m sick it’s everyone’s problem, when I’m doing fine see you later guys.
I don’t subscribe to the idea that a person went through a tough time so that’s the reason they don’t come back here and do the survey. That’s selfish thinking.
I’ve stopped helping those who have been here for more than 3 months and can’t be bothered to do the survey. Yet when they are unwell they expect others to answer their worries. We could fill our qouta of PFS survey participants in a month if these people helped out.
Scientists need to see PFS is a real condition, they need to see patient data. Axo and Awor spent time speaking to scientists and asking them what they need to take PFS seriously. From those discussions came the patient survey, a world first in PFS. When we have the patient numbers we can take the next step into securing world class research that should unlock the cause of PFS.
Be part of the new research, its your chance to have your data analysed which you can tell your doctors about who may show you more compassion and take your condition more seriously. Together we will make the next study happen and give ourselves a new hope.