Sometimes when this site is quiet I wonder if people are using ChatGPT or similar to discuss their symptoms and get answers?
Do you think the site still has value and do you think reading about and talking to real sufferers is still superior?
Sign-ups still seem reasonably healthy, but sometimes it seems like there arenāt many newcomers introducing themselves (New here, let me introduce myself btw! )
Iāve never tried chatgpt for anything, Iām pretty strongly anti AI for most of its uses unless itās being used in medical situations like to interpret scans for example. I donāt think a machine can equal a human being for therapy uses. I think this site is most useful as an archive of information where you can come and look up something youāre curious about. Having info all in one place is better than having to search through various web pages for specific info. Itās not very active these days and people who get treated successfully donāt often stay active here which limits the siteās usefulness. So itās most useful as an archive so I think it should stay around even if just for that usage even if few people still talk here.
Thanks @MissMigraine. Agree with your sentiments that patient information should be āhuman firstā. The site will not be taken down if I have anything to do with it and hopefully activity will spruce up in the future.
Iāve belong to a very active Facebook group for VM so itās likely many people are also using social media sites to connect with fellow-sufferers. That said, I find the FB site to be mostly people, often newly diagnosed, asking the same questions over and over again. Which meds work for you? Have you tried this or that? And thereās a lot of general misery-sharing along with some questionable advice from unqualified people. The great thing about this site is the information provided is carefully moderated and there is a wealth of solid, helpful scientific information. I donāt think this site is well known, though, and I donāt know what, if anything, can or should be done about that. I very much appreciate this site and would hate to lose it.
I agree with the other respondersā¦I suspect quite a lot goes on on the platforms I have no idea about - yes often whining and asking for medication to āstopā it - on the FB pages anyway!! I followed 2 Meniereās pages - one now defunct it seems, and the other just chugging along⦠Personally, I prefer a forum like this one, and it has a huge archive of information for anyone willing to read and learn. Personally, I only interact if I feel I can offer any help, but I still do pop by now and again to see how folk are doing. I also realize that Iām old and old-fashioned . If you can keep it going, I think there are still folk who can be helped, or at least discover that they are ānot aloneā, which in itself is a huge help, in my opinion!
Agree with others. AI can provide some pretty amazing research, but it has no idea what its like to be miserable and dizzy. Being able to talk to real people about their experiences makes all the difference.
I use ChatGPT pretty much every day and work in a field pretty adjacent to āAIā. AI is good as essentially a search over the entire corpus of āweb dataā outputted in clear, always-unique natural language, but is hardly a substitute for the lived experiences of other people.
Iāve discussed various aspects of my treatment with ChatGPT before, without really a whole lot of significant insight. Its worth noting that conditions like Vestibular Migraine and Meniereās are on the more uncommon side without a whole lot of written first-hand accounts of living with the disease.
Iād even imagine that pages on this site that are accessible to the āclear webā without a login were used in the corpus of text used to train ChatGPT. So in a sense it is useful for everyone (the robots included) for us to continue writing about our experiences.