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Leonard Jason wants ME/CFS patients to do a PEM survey

Discussion in 'BioMedical ME/CFS Research' started by Webdog, Apr 10, 2018.

  1. Webdog

    Webdog Senior Member (Voting Rights)

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    For those interested in participating in ME/CFS research.

    https://redcap.is.depaul.edu/surveys/?s=YJNCDPHXTH

    Jason.png
     
  2. Mattie

    Mattie Senior Member (Voting Rights)

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    Done.
    Good survey I think.
    Took me about 15-20 minutes to complete.
     
    Last edited: Apr 11, 2018
    Joh, Hutan, Louie41 and 11 others like this.
  3. Marco

    Marco Senior Member (Voting Rights)

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    Done.

    That wasn't too bad.
     
    Joh, Hutan, Louie41 and 10 others like this.
  4. Keela Too

    Keela Too Senior Member (Voting Rights)

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    Took me forever! Maybe I over think things!

    But it's done :p - with one or two added comments.
     
    WillowJ, Mij, Forestvon and 13 others like this.
  5. EzzieD

    EzzieD Senior Member (Voting Rights)

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    Just finished it, thanks for the link! It's good to be able to take part in ME/CFS research that doesn't require one to be living in America and/or to have to travel - hope they get a lot of international response and that the survey results will be helpful for their research.
     
    Joh, Hutan, Louie41 and 11 others like this.
  6. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Done. Only took me 20 mins. It said it would take two hours--maybe we've rushed it? But I couldn't have spent two hours on it. It would have ruined me.
     
    Joh, Louie41, Melanie and 6 others like this.
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    says it should take 1-2 hours to complete. Maybe, if you can read the print which I found very hard to read (too condensed)......might give it another go another time.
     
    Joh, Louie41, Melanie and 6 others like this.
  8. Keela Too

    Keela Too Senior Member (Voting Rights)

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    If you use the "control" button and the rolly thing on the mouse, you can make the whole page bigger & the writing is then easier to read. I agree it was tough going.
     
    Manganus, Joh, Binkie4 and 7 others like this.
  9. unicorn7

    unicorn7 Senior Member (Voting Rights)

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    Done:thumbup:
     
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  10. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    Done, it wasn't too bad and covered alot. I noticed no mention of crashes brought on from social interaction such as visitors or chatting too long on the phone. A real debilitating and horrible part of my illness. I did add it in on my notes.
     
    Manganus, Mij, Forestvon and 13 others like this.
  11. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    I had to save what I could do and hope to come back to it later.

    Cognitively it was a challenge and that is going to cause difficulties for some people
     
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  12. Skycloud

    Skycloud Senior Member (Voting Rights)

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    I've not completed it yet. I did find it difficult to include 'weird' symptoms which I find hard to explain and haven't got the energy to try. I'm also finding that although I can see the questions seem to be worded carefully they don't always fit with how I would put it. I'll give it another go tomorrow

    I'm grateful for the chance to take part in research.
     
    Joh, Hutan, Louie41 and 11 others like this.
  13. mango

    mango Senior Member (Voting Rights)

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    Done :) It took me several hours (not including the many long breaks). Very hard work, and I wrote several long comments too.

    I think it's really great that they are interested in trying to improve the definition and understanding of PEM (super important for so many different reasons!), and that they are asking for our input/experience like this.

    Me too! :)
     
  14. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    Done

    Pretty comprehensive if bit repetitive ..managed it by taking a break in the middle ...to be honest I can’t think straight now so I’m not going to bother critiquing the design ...just glad someone is asking questions to focus on this.
     
    Jan, Mij, Invisible Woman and 9 others like this.
  15. andypants

    andypants Senior Member (Voting Rights)

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    Done:) I finished it earlier today, but it was very nearly too much for one day. Glad to do it though, good questions.

    I also included pem from social interactions, as well as any form of transport, in the notes. I found it hard to rate the symptoms, as they all seem equally horrible to me:bored:
     
  16. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Completed half and saved to finish later. Too much for one go.
     
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  17. Dancer

    Dancer Established Member

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    Done. Lenny Jason is a treasure. The very wording of his questions made me feel HEARD. Over the years he has really paid attention to patient's descriptions of their experience. How refreshing!
     
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  18. Chris

    Chris Established Member (Voting Rights)

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    Done. A bit strenuous, but at least this made me smile:
     
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  19. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    Someone who suffers from social interaction!! Isn't it an awful aspect of this illness..
     
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  20. Andy

    Andy Committee Member

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    It might just be me but there seemed to be a couple of oddly worded questions.
    Is this asking if I COULD be sensitized? Or if I HAVE been sensitized? My guess is he's asking if I believe I have become sensitized. Maybe.

    So this seems to be asking if I have had ME for all the time I've been ill with ME.
     
    Manganus, Jan, Mij and 14 others like this.

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