I know that came out months ago in the paper. Every is allowed to say how they fell so here I go. If you have never had a member of your family or if you are not a member of MI and so on the you have no I deal the hell one goes threw. Yes its up to your doctor what kind and the amount of med you take but they can't tell how it should make you feel unless they have take-n it. All they can do is tell you what the " side effects are supposed to be". The sites "PatientsLikeMe" is a place where one can go and talk to some one who has not jut read or study about it but who has lived it. And yes we talk about or meds we talk about what side effects one might have, if they think it works for them. We express how we feel what we feel in side. We are thier for each ohter beacause we the "Patients" on that site need some one who has been threw it os one who is going threw it. Just because you give one meds does not make them better right off the bat.No one has to be along and no one should ever be alone that is at lot of what wrong in thid world lots of people think that if you give a pill its "ok we are done have a good life deal with" and some find that by not thinking about it then its not real at least until it happens to someone they know. I have Bipolar I do not care who know I have had good & bad days as well as good meds and bad meds but I don't give up an dits great have someone that I can turn to other then someone that just wants to give me another pill. I have a support group out side of a doctors office, which I love my doctors they do a great job but some times you just need to talk with people who are where you are at
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That's why 19,000 people—the number of users on PatientsLikeMe.com—have agreed to put intimate details, like whether a certain drug causes constipation, on a social-networking site. Collective knowledge—something that the Web, and in particular the social Web, is very good at enabling—allows them to put their disease in context. Am I taking a lower dose than other ALS sufferers? How normal is this side effect? Bringing health histories out into the open can provide answers to those questions, something that even doctors can't do.
It's also about gathering the collective wisdom, and making it available to researchers. "In the end, it's the same as open-source software," says Heywood. "If you can see all the information, you can correct the errors." Drug firms and doctors are far from infallible, and in this way the PatientsLikeMe community serves as a useful check. The site is, in effect, building an enormous database of patient data that can help determine if drugs and treatments are having the desired effect.
Of course, such research is what economists call a positive externality—it doesn't necessarily help the person doing the sharing. That might limit the appeal of transparency. But this is the era of the "overshare," after all, when deeply personal information regularly makes it to blogs and MySpace pages. And the trend has two powerful backers: both Obama and McCain have released their health records to the public.
© 2008
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