Donating to find a cure or something close? Not a fan of the waiting game

General Discussion
#1

Hey guys,

I’m pretty new here (14 days post crash). So I’m sure almost all of you know more about this than me and possibly have already had this discussion. However, I’ve been struggling pretty bad the last 2 weeks, like many of you have and are. The waiting game is bs to me.

I can’t help but wonder if there’s more we can do. Can we find a scientist or a few and donate money to help research for a cure or something close? Is this already being done?

It’s 2019, medicine has evolved exponentially over the years and a lot of it had to do with funding experiments and actually paying people to look for the answers. I’ve done well early in my career and I am willing to donate but wouldn’t know where to start.

Anyone have input or know what exact scientific research is being done for this problem, who is doing them and who to reach out to?

Christian

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#2
#3

I agree with you. The only way out of this mess is for us to start paying for our own research. Merck isn’t going to fund research that gets it sued and there isn’t any incentive for anyone else to either. To catch you up, what people have been doing here for the last 10 years is basically complaining, taking herbs, and fasting. There doesn’t seem to be any evidence that anyone has recovered from PFS with any of it. Although a few individuals have said they’ve recovered, there’s no way of knowing whether or not they really had PFS in the first place, and their number is very small.

What I would do if I were you would be to look at Awor and Mew’s manuscript describing their hypothesis on what PFS is from about 10 years ago, and then look at a few papers on the foundation’s medical research page. Unfortunately, someone else would have to give you a link to the former, but here’s a link to the latter: https://www.pfsfoundation.org/publications/

Once you’ve done a little reading there I think you should be fully up to date. Right now we are basically just impotently waiting for someone to fund research and that’s all we’ve got. There’s some reason to believe that an Allopregnanolone analog coming out in about 2 years might be of some help for some symptoms, but that’s about all we’ve got to look forward to right now and it certainly will be less a cure than an ameliorant. Nothing else has worked and no one even knows what PFS is. It looks like whatever it, however, is probably the same as what affects people who have taken Accutane and SSRI’s, so all these groups should be unifying, but haven’t yet.

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#4

Hey @cblumel47

We working on more transparent user driven funding opportunities, but unfortunately we are waiting (including all of us involved behind the scenes) on a study that is famously long in the tooth. This data is very important to the next steps of any practical use. In the meantime, the coadministrator @awor is a founding member of the PFSF. If you’re in a position to support research in the near future in a significant way it’s worth sending a pm to discuss.

Best

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