Recovery topics

General Discussion
#1

There have been a number of recovery topics recently. I’m interested to hear what people think about recovery topics, how beneficial they are, how trustworthy they are, etc. Is it worth trying to get assurance that the post is made by someone genuine? What proof could we get? If a recovery topic says that a dangerous substance is key, should it be taken it down? If a recovery topic makes implausible claims, should it remain visible? If a topic is made by a new account should we assume that it’s not genuine?

I haven’t spoken to the admins or other moderators about this. I’m just interested to hear what people have to say.

1 Like
#2

Leave them up.

2 Likes
#3

The recovery stories on this website and my own rare experiences with temporary improvements are the only things giving me actual hope for a possible permanent end to this condition in my lifetime.

I understand the danger that these recovery stories potentially bring and I don’t want anyone to end up worse, but what else do we have? Nothing.

The extreme variety in alleged ‘cures’ and lack of common ground in these stories does not help with any credibility, or help us chart out what reseach might be interesting to pursue. It indeed seems peculiar to me that a lot of them are from people who have no history on the forum. Especially if a person appears and claims to have suffered for a decade. I just wish the people who ‘fake’ recovery stories realized how much damage they’re causing to the entire community of sufferers.

But deleting these recovery stories might also mean deleting the ones that are potentially valid experiences, when we are in dire need of those.

Not having any report of any person recovering would mean that this forum becomes mostly a lot of doom and gloom, the occasional at best court or article update, and not much else.

I wish there was actual in-depth research into our condition, to offset the bullshit and the endless speculation, anything to provide some genuine perspective.
But there just isn’t. There’s not even a hint of general direction in which PFS research should be done.

I mean, what else do we have (in terms of progress) at this point than our own experiences and observations and a handful of doctors, who want to help us but don’t know how?
I don’t like the fact that people use themselves as labrats, but I can’t really blame them, because we have nothing and when we don’t even have (false) hope, then we have even less.

5 Likes
#4

Spot on, @Wintermoon.

#5

Personally think all recoveries should stay as they are.
We’re all adults at the end of the day and we must make our own informed decisions on whether someones story seems to be genuine or fake.
If you were to censor recovery posts i think it would only be fair to do the same to some of the other outlandish and truly ridiculous sypmtomology we read about on this forum at times, this can be just as harmful for new & current readers.
Basically take everything with a pinch of salt & sift through the bullshit for yourselves. :laughing:

#6

But it has to be said that recovery threads are irritating click-bait and desensitize me to useful findings in the future much like “the boy who cried wolf”.

#7

Most recovery threads are annoying because they are written very carelessly but please don’t become like the FDA and censor and punish people who use words like cured!