Help create an Emergency protocol to give to ER doctors

Vansails

Member
Hi all,

I am looking to create a small document I can give to ER doctors and keep in my wallet for emergencies. I want to make a general ER protocol information package for all ME sufferers.

What would you think are the most important things an ER doctor treating you needs to know? For mitochondrial diseases, this list is long, and I believe ME is similar as we are at risk for catabolism.

I need to include what ME is, the dangers and risks we face like cancers and heart problems, information for first responders, our sensitivities, how severe ME is, and other important facts that can be backed by ecidence.

What medications are most ME sufferers sensitive too? (anesthetics? which ones?)
What should we tell a doctor who knows nothing about ME or thinks it's a minor fatiguing symptom?
Do ME patients need specialist care during emergency surgeries and what needs to be known beforehand?


ANything you find important please suggest. MANY thanks. I hope we can create something useful for all of us. If anyone is interested in taking over this project that would be cool too.

heres an example of an anesthesia guide for mitochondria disease patients, http://www.mitoaction.org/files/Anesthesia.pdf
 
http://www.prohealth.com/me-cfs/me-chronic-fatigue-syndrome-anesthesia-recommendations.cfm is a good article and has references on it.
.....
from that article

"
Epinephrine can also produce panic attacks. (8) ME/CFS patients who have had anesthesia with epinephrine have reported sleeplessness, jitters, and anxiety.
"

The problem can be actually a lot worst then that for many of us who have ME, anesthesia containing epinephrine eg lidocaine dentists use can contain it if you dont tell them to leave it out of it... has caused some of us seizure activity and to go into severe neurological issues. I was left with my whole body spasming and jerking to the point I couldnt even stand up after lidocaine injection at dentist before i knew to tell them to not give me anything with adrenaline in it.

there is also some links on this at http://phoenixrising.me/resources/preparing-for-surgery-anesthesia-warning which could be helpful.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
http://www.prohealth.com/me-cfs/me-chronic-fatigue-syndrome-anesthesia-recommendations.cfm is a good article and has references on it.
.....
from that article

"
Epinephrine can also produce panic attacks. (8) ME/CFS patients who have had anesthesia with epinephrine have reported sleeplessness, jitters, and anxiety.
"

The problem can be actually a lot worst then that for many of us who have ME, anesthesia containing epinephrine eg lidocaine dentists use can contain it if you dont tell them to leave it out of it... has caused some of us seizure activity and to go into severe neurological issues. I was left with my whole body spasming and jerking to the point I couldnt even stand up after lidocaine injection at dentist before i knew to tell them to not give me anything with adrenaline in it.

there is also some links on this at http://phoenixrising.me/resources/preparing-for-surgery-anesthesia-warning which could be helpful.
Health Rising has a list of five resources for surgery here - http://www.healthrising.org/forums/resources/categories/surgery.173/
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I would think it would involve possible sensitivities to drugs but I don't know which ones.

It should include information on low blood volume and the need to supplement after surgery with saline
 

Lissa

Well-Known Member
I carry a card in my wallet that I got from a New Jersey ME/CFS association website. It seemed to cover such basics. I found it a few years ago - don't recall exactly where I got it. A google search might find it or something similar. (Sorry I'm kinda cooked, or i'd follow up on it myself...)
 

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