You made a specific point regarding a simplistic yes/no presentation that I addressed. I do not take it personally - I would not bother replying if I was personally antagonised or you were breaking the rules. If you were excluded it would not be for not taking the survey and I have made no such demands - I’ve suggested it’s a way to help. I don’t know what you mean by we’re in a democracy but this is a private website provided by the staff’s effort and money to patients, not a country. If you were to be banned in the future it would not be for not personally choosing to take the survey, though. Asking people to take the survey (a major objective of the continued existence of this site), and trying to address stated concerns, is what we have spent a lot of time doing and will continue to. Certainly, not being able to suggest that, when there’s evidence that these authors tried to gain standardised data from this site, would be remiss in reply to supporting scientists efforts -especially when they are not currently appreciative of something apparent to both you and I.
Besides there being no grounds to, editing the survey after issue would invalidate the results. No standardised surveying the tailoring can ever be exact to every patient, or it would not be standardisation. For example, the IIEF (included in our survey and in PFS publications) is the gold standard of urological assessment for male erectile function, but has been criticised as it is not fully suited to someone who is not sexually active at all. Nevertheless, it is used widely in research and patients can make their closest estimation of an answer.
As we ask about a remission between cessation and the crash, you could select that you felt even better than before while going on to list your crash symptoms in the month time frame after cessation. If you state you felt even better than before in the multiple choice regarding remission, you give a pre-fin per-symptom assessment, and then state your crash symptom in the month-following window, I don’t see how that does not capture what you are describing while capturing the crash. I do appreciate a low percentage of cases are significantly outside this time frame, but they still have the pre, during and now timeframe that will clarify a broad progression, as well as stating they have experienced a crash and providing data on that at the outset. It is therefore not gathering incorrect data if a crash doesn’t fall in that time frame - it just means that isn’t when your crash was. One day out is not going to somehow break the aggregate picture in your personal case however. Some allowances have to be made for standardising an extremely complex situation into fixed research-agreeable time frames (predominantly 4 weeks).
Anyway, those concerns are now as addressed as they can be so it’s up to you. It would help us advocate, however - trust me.