3 ms·
> It is anecdotal, but the stories are very real and quite intense. They are all real, in the sense that they are stories being told, but I think deriving any
by amscanne 6y ago
> It is anecdotal, but the stories are very real and quite intense.
They are all real, in the sense that they are stories being told, but I think deriving any kind of conclusion from that kind of forum is not a great idea.
Self-diagnosis (of the particular “long term effect”), general misinformation and paranoia, and self-selection into an online forum of like-minded folks seems to produce consistently misleading results.
If you pointed to an anti-vaccination forum, you’d also see a lot of certain people with real stories.
- DoreenMichele 6y agoSelection bias is also a huge issue. I most likely had it in March. It seems to have reduced my symptoms from some other long-standing issue. I hesitate to mention that at all because I already get so very much unwarranted hatred. My only point is that press coverage is already biased and survivor groups explicitly are aimed at collecting up people having a hard time. I don't know how we make real progress. I do know most "support groups" are horrible shit shows where you can't do any real good for fear of being accused of "victim blaming." Social garbage is a huge barrier to doing anything good for any health issue.
- latchkey 6y agoCorrect about drawing conclusions, which is why I mentioned that it is anecdotal. That said, before I mentioned it, had you heard about the burping issue? I sure hadn't. This is all grain of salt, but given how novel this thing is... pretty much the only information we have to go on at this point is from forums like this. Therefore, I think it is a valuable resource that should not just be discarded or ignored. Over time, this will of course get distilled down into real medical research and studies, but it is still interesting to listen to today.