The Baylor study is still ongoing. Not sure when results are expected. It’s been quite the slow burner. I think the last estimate from Awor was in October last year when he thought it would be published within the next 12-18 months. Today that would mean within the next six months. Given the history with delays of this study, let’s hope it comes any time next year. There is a lot of buzz that this study will be groundbreaking. Let’s hope all those years of waiting are worth it.
Melcangi recently published something, but it wasn’t groundbreaking. Rumour has it that further studies from his side are ongoing. The Italians are publishing a lot and quickly, so there will probably be something coming again in the next months. Rumour has it that they found a functional change of the 5ar enzym and that they are looking at epigenetic changes that may be responsible for that. Any discovery there would be very helpful.
Sage Therapeutics is making decent progress with Allopregnanolone analogues (an important neurosteroid that is significantly lowered in PFS patients). Phase 3 clinical trials are expected to commence at the end of this year. If these are successful there might actually be a medication that directly targets a proven deficiency in PFS patients.
Other than that, the communities of PFS, PSSD, PAS and other patient groups are increasingly joining forces which will hopefully increase the importance of our problem and will leverage resources.
Unfortunately, it’s not like a cure is around the corner. But I think we are getting stronger as a community, there are a lot of scientists aware of and interested in our probem, the Baylor study will hopefully be published soon and provide a breakthrough in the understanding of our problem, and if we get really fortunate, there might be medication on the way that may improve crucial PFS symptoms like depression and anxiety. Personally, I think this angle makes a lot of sense. I think it is worth waiting for the results of these trials.
I know it’s tough, but hang in there! And, if possible, help the Foundation with donations and participate in the community research project: (Link). We all need to help and do our part to get better!