replicajoelle said: I bet you if they ever DO find a cure it’ll be the most expensive thing on the planet and that’ll just make us feel EVEN WORSE THAN BEFORE. why is so hard for people to understand anything geeeeezzz
Right! I'm sure it'll be entirely unaffordable and then not covered by insurance, as usual. I know healthy people just have a hard time understanding things that they don't have to deal with, but it's not a matter of automatically empathizing, they should be able to just LISTEN.
katisconfused said: AIDS is such a terrible example. Well duh they are working so hard on it because IT’S CONTAGIOUS. People worry it might be them one day. So there is way more research and funds for it.
That's true! if people are worried they'll get something they'll do a lot to cure it...
Plus, everyone's heard of AIDS. how many people hear of the rest of our illnesses? and everyones heard of cancer and that's not cured yet, hmm... I wish people realized, too, that x amount of funding doesn't equal y amount of research, it's more complicated than that. It's not like they really know what they're doing, they're just thinking and trying to recognize patterns and learn more about them, it's not just a matter of throwing chemicals together until they work.
fernjen said: This is such an ignorant statement. I don’t know how much research is being done with your diagnosis, but mine has next to nothing. Science can only study what it gets paid to study.
Yeah, I don't think Ehlers-Danlos has much either. We have a few experts trying to do a lot, but there isn't a lot of money in it. No one in the medical community has heard of it, let alone people outside it funding it...Â
I mean everyone's heard fibromyalgia and chronic fatigue syndrome these days, but no one is funding that either, really. Plus research with those always worries me some. Sooo many people that are diagnosed with fibro and cfs really have other illnesses that mimic it, so how can we trust any research that could be based on a group with a large percentage of cases of misdiagnoses? it worries me a lot with the whole M.E. vs CFS argument, too, if we research both as one and they're really different, how are we going to get anywhere?
