@TFD I’m not seeing a fight, I’m seeing a discussion.
Just to add my two cents:
Nobody is trying to discredit the idea that vitamins are good for you. You’re basically interpreting things way too literally. Obviously yes, eat your fruits and veggies. Honestly, how is proper vitamin intake even sound PFS-patient advice? That’s just common sense. Regarding any other supplements or remedies: Some therapeutic efforts can indeed be beneficial. Nobody is disputing that. We are free to try things and share experiences. The problem is getting a good view of which are beneficial versus which are potentially harmful can be a hard thing to figure out because this forum is a huge pile of anecdotal threads from people sometimes having completely opposite experiences.
The point was never to discredit patient experiences. The problem is that a large portion of forum users are focused purely on self-experimentation based on individual anecdotal reports while not contributing to more constructive collaborative efforts that create a better overview of the condition, its patients, and the homebrew treatment methods.
These are all things you can do without being hampered in any way to pursue any homebrew therapeutic effort of any kind that you were already doing.
The ‘upper echelon’ here is perfectly aware that people are going to self experiment anyway given how awful the condition is and there are very few other valid routes to go… so they actually provided a Survey #2 which actually allows you to comprehensively and constructively input your experience with homebrew therapeutic attempts of whatever sort, in order to structurize and create a better overview of which supplements or therapeutic efforts are the most promising.
< yelling > but nobody is doing that! < /yelling >
So what happens over and over again is that people do something and they make a new thread telling about their experience. Which gets lost in a sea of other similar threads which is a mess of anecdotal reports strewn across the internet which is hard to navigate and does not amount to a larger collection of data, which if we had, would go a long way in separating nonsense from effective pursuits. All it takes is a tiny extra time investment, and if people would spend a small portion of the time writing elaborate forum posts, we would have had much better data by now. It would rule out a lot of nonsense and perhaps even make it possible to create a list of first-line therapeutical things to try.
So while people like yourselves constantly find excuses to dodge responsibility, constantly kick against the shins of those people who took up the impossible task of managing this community as fairly as possible, constantly refuse to add valuable data points (Everyone’s experience is different, everyone’s data points skew the data, but that’s okay, that’s the point) and constantly feel attacked when somebody points out that there is potentially self-destructive and non-constructive efforts going on… there are actually ways to do all the self experimentation you want and still make valuable contributions to the larger whole. It’s not 0 or 1