Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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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

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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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