Maybe it’s just me but it seems like there’s way less activity here compared to a year ago. I find it weird considering the incredible amount we have with PFS Network research, patients speaking out, fundraising success etc.
Seems like there are way fewer people commenting than a year ago despite all the momentum. Has anyone else noticed this?
Calm before the massive storm that’s coming…
Also I think that the traffic in the past was mostly about self-medication and theorizing without doing anything significant to further research and awereness. So I guess it is not too bad that the traffic might be lower
for me it started going downhill after @awor and @axolotl stopped posting
would be really nice to have them make a guest appearance for some morale boost. hope these guys are doing well
Maybe reddit is more mainstream for new generations. Thats almost like chatting.
I always seem to say the wrong thing and get censored. That’s why I hardly ever post anymore. I’m not even clear on what the rules are, who or what this forum is for, and what I’m allowed to say
your post was probably removed when you made a claim that PFS is brain damage.
the community wants to focus on the findings from Baylor study - previous findings suggest it could be an epigenetic disease
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I don’t remember if I said it was brain damage or not, but if I did, I probably said it many years ago before any research was done and I was just as clueless as anyone else.
In general I think you guys have taking a very wrongheaded approach in managing this forum. The only thing you are allowed to talk about is how terrible your symptoms are or spending money on research, so 90% of the conversation has been stifled.
And then people wonder why no one comes here?