Hi all! I'm working to improve the quality of information for patients with ME, fibro, EDS, POTS, mast cell activation disorder having surgery as well as crowdsourcing a set of best practices for hospitals.
The former will eventually be packaged into handouts patients can give their surgeon and anesthesiologist. (There are many great existing resources but nothing comprehensive.)
The latter will eventually be improved in consultation with physicians, and will serve as a resource for patients around the country/world seeking to engage with their local hospitals re: how to improve care for ME patients.
Please jump in (simply create an account and hit "edit"). Too timid to edit the page directly? You can also make suggestions or link to resources in the "discussion" tab.
I'd like to pull from all of the existing medical resources addressing this topic but also from your personal experiences in hospitals and emergency rooms. What policies or training, had they been in place, would have improved the quality of your care?
http://me-pedia.org/wiki/Guide_for_patients_having_surgery
http://me-pedia.org/wiki/Best_practices_for_hospitals
The former will eventually be packaged into handouts patients can give their surgeon and anesthesiologist. (There are many great existing resources but nothing comprehensive.)
The latter will eventually be improved in consultation with physicians, and will serve as a resource for patients around the country/world seeking to engage with their local hospitals re: how to improve care for ME patients.
Please jump in (simply create an account and hit "edit"). Too timid to edit the page directly? You can also make suggestions or link to resources in the "discussion" tab.
I'd like to pull from all of the existing medical resources addressing this topic but also from your personal experiences in hospitals and emergency rooms. What policies or training, had they been in place, would have improved the quality of your care?
http://me-pedia.org/wiki/Guide_for_patients_having_surgery
http://me-pedia.org/wiki/Best_practices_for_hospitals