juliegee Posted October 2, 2010 Report Share Posted October 2, 2010 I saw a blurb on CNN this morning about doing your own medical research- something MANY of us have been forced to do. Rather than admonishing the patient for "cyberchondrism", the correspondent, Elizabeth Cohen, was focused on teaching is HOW to do it better. For instance, she recommended bypassing Google and going directly to the original study via Pub Med or other search engines. Once you find an article that appears to relate to your condition, she had hints on how to read & understand all of the daunting medical terms. Then, this is big, she recommended E-mailing the original doctors who published the study. (She shows how to get their E-Mail addresses.) Apparently many patients get a reply Then, she instructs us to take that correspondence, along with the research, to our local doctors. She even had tips on HOW to present it to our local doc. Good Stuff!!!There is a whole show focused on this tonight called The Empowered Patient on CNN @ 7PM EST. Apparently, she's also written a book by the same name. Because we have rare diseases, we often have to do our own research- finally help on how to do it better Quote Link to comment Share on other sites More sharing options...
friday7 Posted October 2, 2010 Report Share Posted October 2, 2010 I saw a blurb on CNN this morning about doing your own medical research- something MANY of us have been forced to do. Rather than admonishing the patient for "cyberchondrism", the correspondent, Elizabeth Cohen, was focused on teaching is HOW to do it better. For instance, she recommended bypassing Google and going directly to the original study via Pub Med or other search engines. Once you find an article that appears to relate to your condition, she had hints on how to read & understand all of the daunting medical terms. Then, this is big, she recommended E-mailing the original doctors who published the study. (She shows how to get their E-Mail addresses.) Apparently many patients get a reply Then, she instructs us to take that correspondence, along with the research, to our local doctors. She even had tips on HOW to present it to our local doc. Good Stuff!!!There is a whole show focused on this tonight called The Empowered Patient on CNN @ 7PM EST. Apparently, she's also written a book by the same name. Because we have rare diseases, we often have to do our own research- finally help on how to do it better Wow that is so great. I have to watch this. It's nice to see something on TV about using the internet to research your illness. Sounds like it could be very helpful. Quote Link to comment Share on other sites More sharing options...
yogini Posted October 2, 2010 Report Share Posted October 2, 2010 I love watching this kind of stuff - thanks for the info! Quote Link to comment Share on other sites More sharing options...
potsgirl Posted October 2, 2010 Report Share Posted October 2, 2010 If I had a dollar for every search I've done...Thanks for the information! I'll be taping it tonight. Quote Link to comment Share on other sites More sharing options...
flop Posted October 2, 2010 Report Share Posted October 2, 2010 Sounds fab, if anyone has a way of recording it so I can watch it in the UK please let me know. Flop Quote Link to comment Share on other sites More sharing options...
Christy_D Posted October 2, 2010 Report Share Posted October 2, 2010 After my son was given a generic diagnosis of 'autonomic dysfunction' I was doing research on the internet. I came across an article about teens with dysautonomia and it matched my son perfectly. The doctor who wrote it was Dr Phillip Fischer at the Mayo Clinic and I emailed him stating the problems I was having with local doctors. To my surprise, he emailed me back within an hour! He gave me great advice, referred me to a doctor in Cleveland(who has been great) and also attached a booklet about 'Teens with Dysautonomia'. He gave invaluable advice, and it was free!Christy Quote Link to comment Share on other sites More sharing options...
juliegee Posted October 2, 2010 Author Report Share Posted October 2, 2010 After my son was given a generic diagnosis of 'autonomic dysfunction' I was doing research on the internet. I came across an article about teens with dysautonomia and it matched my son perfectly. The doctor who wrote it was Dr Phillip Fischer at the Mayo Clinic and I emailed him stating the problems I was having with local doctors. To my surprise, he emailed me back within an hour! He gave me great advice, referred me to a doctor in Cleveland(who has been great) and also attached a booklet about 'Teens with Dysautonomia'. He gave invaluable advice, and it was free!ChristyThat is so wonderful, Christy! That's exactly what Elizabeth was encouraging all patients to do. The doctors who do this research are keenly interested in it and (often) appreciate hearing directly from patients. They are connected to colleagues all over the world & can often point us to better local help. I'm so happy it worked for you . Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted October 2, 2010 Report Share Posted October 2, 2010 I've been VERY FORTUNATE that my ANS doc, an endocrinologist, has been very open and NOT threatened by ANYTHING search I've done over the eyars. Maybe it's cause I've been at this so long...and I know how to get good info & not "jump on some bandwagon" ..plus I hate getting on NEW drugs but I've suggested older, substitutes...plus I do great homework if I do say so myself.I've dealt with some surgeons that 'sigh or comment internet full of bad stories...well duh like many surgeries not needed or scared into patients..like you will go blind if we don't. . .My only fear on the CNN show is, isn't PubMed a pay site? or lead to many pay links for articles?OFTEN I've come across a 10 sentence abstract but you must pay a huge one time or annual fee to read article...Unless I am thinking of another site.Thanks for the heads up on this show. I will watch it Got it on the DVR as I type Quote Link to comment Share on other sites More sharing options...
StacyRN Posted October 2, 2010 Report Share Posted October 2, 2010 Thank you! Sounds wonderful! Quote Link to comment Share on other sites More sharing options...
houswoea Posted October 2, 2010 Report Share Posted October 2, 2010 My only fear on the CNN show is, isn't PubMed a pay site? or lead to many pay links for articles?OFTEN I've come across a 10 sentence abstract but you must pay a huge one time or annual fee to read article...Unless I am thinking of another site.If your local library subscribes to internet databases, or if you are a student enrolled in a university, you can get these articles through their sites. It'll probably be labeled "electronic resources" or something like that.If you can go on a database like Ebscohost, they usually have a medical themed section like Medline, and all the pubmed articles come up, but it's harder to search through things and you can't just look for a certain doctor or author. But it's free? Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted October 3, 2010 Report Share Posted October 3, 2010 I will have to watch the repeat as our DVR rebooted at the beginning of the show and takes 15 minutes to reset. (Taping the IRL race while house mates gone so we missed several laps but I digress)I did see the last segment of the CNN show and must say this. If a woman has cancer and wants to have surgery to remove body parts & organs, fine. It's YOUR Adult decision.But the fact she BURDENED her little girl with the fear SHE might 'have this gene' horrified me! WHY would you dump that info on a little girl? I called my sister ( who chooses not to OWN a tv anymore cause of the junk on it ) and asked her if she found that offensive and she said yes. She raised four wonderful successful kids with challenges along the way. NEVER would she tell a little kid "You have this gene & may get THIS ILLNESS & possibly die."So I hope the earlier part of the show was not like that...i caught a bit on another tv about the stroke person & recovery...but RUINING a kids childhood by creating such fear with such medical info offended me.TESTS are not always %100 accurate.Ok. off soapbox:-D Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.