As I read trough the posts, I see so many different ideas tests and treatments that people have done..
I'm not so much into software and so on, but Is there a possibility that we can somehow quantify what was done and the results of it?
I feel like we need to collect data on this.
Posted Nov 4, 2022, 1:39 AM UTC
The thing is, you can do statistical analysis on what people claim to have done tests but how do you verify that they were actually carried out. Unless people are willing to upload cropped medical documents and aggregate them in one place, the data can easily be skewed
I get you, it would be better if there were good ways to do that, I also don't see a practical one. It is difficult to verify, but at this stage it isn't as important as in later stages. It's more like "getting a vague picture" Also many studies work with questions, where they just have to trust. And trust is one of the currencies that this subreddit doesn' lack..
It would be good to narrow down on the demographics of where PSSD is most dense. Then as a community organise funding to for said people to get an array of tests done. Similarly to what Healy is doing with the neurologist in Sheffield asking for volunteers to do skin biopsies. That’s best way imo.
I keep vaguely intending to pool everything I can get my hands on into a wiki format that can grow organically once it's started. Not so much for stats like you're asking, but more because I think it might help the community for a number of reasons. I'd probably link it to or offer it to pssdnetwork once done. But stats could be added to this.
The problem is that I'm barely able to keep on top of my own TODO list, so trying to collate everything in the way you're suggesting may be too difficult for me timewise. If you're able to, please do! I don't think software is really the issue - the issue is going to be manually going through the ideas, tests, and treatments one by one and adding them up. If you're hoping machine learning can collate things automatically, then I suspect (but don't know, please don't take this as gospel) that we won't have enough data for that to be automatable.
I was more thinking about some sort of a site where people can actively share their data..
where you can go trough several questions etc and maybe add comments in the end on further information (which might update the questions that are asked)
Btw. Thank you for your efforts :)
Ok. So I think the "how stuff works" was an attempt at that specifically? I haven't heard from them for a while, so I suspect they reached the same "lack of conclusive data" problem that the community has.
More interestingly, I think Dr. Healy has one of the biggest and most reliable datasets through people responding to his questions through rxisk. Basically he's done exactly what you suggested, but for years. He was unwilling to share this dataset in an anonymised form to me a few months ago, but then he did to people who were active on this sub a few months ago. Reddit doesn't allow me to search whilst typing so I'll edit in a link/username after so you can contact them. They were asking for volunteers to look through the data, although I did and they never responded. But I think they've basically done what you are suggesting, but as a snapshot rather than an ongoing collection. And Healy is doing what you're suggesting, but keeping the data private. And "how stuff works" is doing what you're suggesting, but it's unlikely to spot patterns that humans miss in the data quantities provided.
Basically I think it's a good idea, but be aware that enough people do the same thing, the responders get weary and an increasing number will not respond each time. This isn't your fault, but it is reality
https://www.reddit.com/r/PSSD/comments/wg2xq0/pssd_survey_2_dispelling_the_its_just_depression/?utm_source=share&utm_medium=android_app&utm_name=androidcss&utm_term=1&utm_content=share_button
was one of the posts from the user doing the surveys that had access to Dr. Healy's dataset. You can search his profile or click around for the others - that was just the first one I found.
As far as I'm aware what they were doing has basically just stopped without a conclusion?
nice to know about those instances.
yes, also in this forum, most have taken ssri's, which is most often due to psychological difficulties and those usually don't make people more reliable. (me included, but commitment is recently some sort of healing path for me)