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Dr. Baraniuk Survey On PWME/CFS's Experiences In The ER

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baraniuklab

Messages
2
Hello,

My name is Christian Timbol and I work in Dr. Baraniuk's lab. Thank you for posting the link to the survey.

I created the survey with the intent of bringing to light CFS/ME patient experiences in the emergency department (ED). Please consider completing this ANONYMOUS survey. All responses are informative. If you have not gone to the ED for CFS/ME related symptoms, please share your reasons in this survey.

http://goo.gl/forms/hl6DJBV5c9

Thank you so much,

Christian Timbol
Medical Student c/o 2016
 
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Denise

Senior Member
Messages
1,095
@baraniuklab - Interesting idea!

How widely can this be shared?
Is the survey US based or international?
How are you planning to disseminate the results?
 
*GG*

*GG*

senior member
Messages
6,389
Location
Concord, NH
baraniuklab said:
Hello,

My name is Christian Timbol and I work in Dr. Baraniuk's lab. Thank you for posting the link to the survey.

I created the survey with the intent of bringing to light CFS/ME patient experiences in the emergency department (ED). Please consider completing this ANONYMOUS survey. All responses are informative. If you have not gone to the ED for CFS/ME related symptoms, please share your reasons in this survey.

http://goo.gl/forms/hl6DJBV5c9

Thank you so much,

Christian Timbol
Medical Student c/o 2016
Click to expand...

Welcome to the Forum, glad you found us ;)

GG
 
D

Denise

Senior Member
Messages
1,095
@baraniuklab

Thanks for clarifying.

Is the survey restricted to a single user in a household or can if be taken by multiple affected people in one household?
 
Kyla

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
Canada
baraniuklab said:
Hello All,

I appreciate all the attention this has received.

The survey is not limited to the US.

Our intent is to publish the data as a research article.
Click to expand...
Hi @baraniuklab
happy to fill out the survey, just wanted to point out that as a non-american there is no answer that fits for what kind of insurance I have. This will be the case for anyone from a country with socialized healthcare.

Thanks.
 
Never Give Up

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
Hi @baraniuklab, Christian, thank you for spending your time on this disease! Your age range starts at 18, would you be interested in the responses of a 17 year old and his mother anyway?
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
baraniuklab said:
Hello,

My name is Christian Timbol and I work in Dr. Baraniuk's lab. Thank you for posting the link to the survey.

I created the survey with the intent of bringing to light CFS/ME patient experiences in the emergency department (ED). Please consider completing this ANONYMOUS survey. All responses are informative. If you have not gone to the ED for CFS/ME related symptoms, please share your reasons in this survey.

http://goo.gl/forms/hl6DJBV5c9

Thank you so much,

Christian Timbol
Medical Student c/o 2016
Click to expand...

Brilliant that you're looking at this, Christian. It's a very important topic - please also pass our thanks on to Dr Baranuik.
 
Sushi

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
@baraniuklab I did the survey too. I only had one quibble with a question: something like "How does walking a long distance affect your symptoms?" I didn't see a choice that would fit many of us, which would be--I am unable to walk a long distance.

Thanks for doing this survey!
 
Gemini

Gemini

Senior Member
Messages
1,176
Location
East Coast USA
Last edited:
D

Denise

Senior Member
Messages
1,095
Gemini said:
Having just been to the ER this survey is timely! Agree with others, it's quick & easy to do.

The hospital physicians/staff were not knowledgeable about ME/CFS.Needed are ER Guidelines for treating ME/CFS patients covering symptoms that often lead to ER visits.
Click to expand...


Sorry you had to go to the emergency department. (And I am sorry any patient has to!)

Am I correct in thinking that IACFSME mentioned at the August CFSAC meeting that they are developing guidelines for emergency department? I can't check the CFSAC minutes or presentations because they aren't posted yet.
 
Gemini

Gemini

Senior Member
Messages
1,176
Location
East Coast USA
Denise said:
Am I correct in thinking that IACFSME mentioned at the August CFSAC meeting that they are developing guidelines for emergency department? I can't check the CFSAC minutes or presentations because they aren't posted yet.
Click to expand...
Good news! I hope you're correct! Perhaps you can post here when the minutes are released?

Hope they base their guidelines on patient input/experience.
 
Michelle

Michelle

Decennial ME/CFS patient
Messages
172
Location
Portland, OR
I realized after I already finished taking the survey that I forgot to mention among the most problematic issues with the ER: its sensory intensive nature. It's one of the main reason I avoid the place like the plague, including a few times I probably should have gone (but, hey, I'm still alive so it all worked out, right? :cautious:). It might be helpful to have questions about what makes symptoms worse at the ER -- too much light, movement, noise, long hallways to walk down, etc. Just a thought.

But thank you for doing this. It's among my biggest frustrations over the years that I cannot go to an ER with any confidence that the clinicians there will know anything about my disease (how to treat it or at least not make it worse) -- or even that I will be treated with respect. This is a huge problem for patients.
 
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