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

Discussion in 'Active Clinical Studies' started by Never Give Up, Sep 30, 2015.

  1. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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  2. baraniuklab

    baraniuklab

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    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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  3. Kina

    Kina Admin Support Staff

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    Thanks @baraniuklab

    I just filled out the survey. Did you just want people in the USA to fill it out? This was not specified.

    Welcome to Phoenix Rising.
     
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  4. Denise

    Denise Senior Member

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    @baraniuklab - Interesting idea!

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

    baraniuklab

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    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.
     
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  6. *GG*

    *GG* Senior Member

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    Welcome to the Forum, glad you found us ;)

    GG
     
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  7. Denise

    Denise Senior Member

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    @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?
     
  8. duncan

    duncan Senior Member

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    Cool idea. Not sure I agree with CFS/ME, especially in the US. Some might suggest ME/CFS instead.

    Just a kindly observation.

    Welcome to the Forum. :)
     
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  9. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    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.
     
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  10. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    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?
     
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  11. Sasha

    Sasha Fine, thank you

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

    Sasha Fine, thank you

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    I just did the survey. Quick and easy to do.
     
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  13. Sushi

    Sushi Senior Member Albuquerque

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    @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!
     
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  14. minkeygirl

    minkeygirl But I Look So Good.

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    This is also on Corts forum health rising although it doesn't have the option to explain why you haven't gone.
     
  15. Effi

    Effi Senior Member

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    I just took the survey. It's quick and easy and leaves some space for extra comments.
     
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  16. Gemini

    Gemini Senior Member

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    Last edited: Oct 1, 2015
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  17. Denise

    Denise Senior Member

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    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.
     
  18. Gemini

    Gemini Senior Member

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    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.
     
  19. Michelle

    Michelle Decennial ME/CFS patient

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    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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