The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Jason: Questionnaire - Assessment of Demoralization & Depression-like Symptoms Experienced by [PWME]

Discussion in 'Active Clinical Studies' started by mango, Oct 14, 2016.

  1. mango

    mango Senior Member

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    https://www.facebook.com/leonard.jason.12/posts/10208889497127699

    (You can save your answers at any time and come back to it/continue later.)
     
  2. Countrygirl

    Countrygirl Senior Member

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    https://redcap.is.depaul.edu/surveys/?s=TNPC3XR8HE

    Dr Leonard Jason is asking for people to help him with this research.

     
  3. snowathlete

    snowathlete

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    I started it and saved it to finish later
     
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  4. mango

    mango Senior Member

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    No worries, no need to apologise :) Let me know if I should change the title of the thread I made, to make it easier to find :)
    Moderator note: Threads merged.
     
    Last edited by a moderator: Oct 15, 2016
  5. Jan

    Jan Senior Member

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    Is this just for US patients or for anyone?
     
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  6. Dechi

    Dechi Senior Member

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    And do you want all patients to answer, the less severe to the most severe ?
     
  7. mango

    mango Senior Member

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    Anyone that has ME/CFS and is 18 years or older :)
     
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  8. mango

    mango Senior Member

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    Yes, anyone with ME/CFS, regardless of severity.
     
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  9. Cinders66

    Cinders66 Senior Member

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    Can there be research on this important topic which affects the severely affected that isn't going to take 90 minutes? I can do it saving it etc but it would be a whole week - 2 weeks concentration Energy.
     
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  10. Joh

    Joh Inactivist

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    Started it and saved it for later, too (takes about 90 minutes).
     
  11. RogerBlack

    RogerBlack Senior Member

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    Well - there is an email there, and suggesting that may be a good plan.
     
  12. worldbackwards

    worldbackwards A unique snowflake

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    90 minutes is an overestimate. Or maybe I'm just gifted. It took about half that.
     
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  13. Joh

    Joh Inactivist

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    Thanks, good to know, took the info from the consent form. (Not to say that you´re not gifted :))
     
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  14. daisybell

    daisybell Senior Member

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    I've done it - didn't take me that long either (being gifted also.......:rofl:)
     
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  15. taniaaust1

    taniaaust1 Senior Member

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    I wish there was a way we could do this study but be able to leave out some areas completely if too hard to answer eg the part on income. My head has no idea of my yearly income.. to be able to answer the questions of income and lost earnings, its going to take me some time as Im going to have to go through files at home looking to find the answers.

    what currency do aussies use? I have not a clue how to dollars and cents on this form and dont know what its called.

    edit Right now my brain doesnt even know how many weeks in a year :/ I just managed to look up online the disability payment pension amount here its $1,289.80 per fortnight so now just have to look up how many weeks in year.

    Not an easy form for those who have brain issues though the questions so far are clear.
    .................................................

    for anyone else stuck with the form and your brain.. its apparently 52 weeks in a year or 26 fortnights in a year.
    ......

    so for an aussie disability pension im coming up with around $33540 per year with using online calculator to a rounded number. (i hope this is right, there is good chance Im putting down completely wrong numbers onto the form).

    "The Australian dollar (sign: $; code: AUD) is the currency of the Commonwealth of Australia,"
    ..............

    after 30 mins of trying to do this study and not able to get throu the first page, Im going to have to stop as I am screwing up my maths and cant figure it out. If anyone can help me figure out my figures so I can partake in this study I'd really appreciate as Ive had tons of crappy experiences around this illness and others so I'd like to do this study.

    I just came up with a much lesser number for previous annual amount before getting ill compared to what im getting now and it must be wrong as Im seeing that previous fortnightly number as bigger (unless my brain is giving me false impressions of things).

    details .. I was on an Aussie single parents pension before I got ill (is it same amount no matter how many kids? I had 2).. ($738.50 fortnight?) and now are on a disability pension ($1,289.80 fortnight) so trying to figure out my before ME/CFS and after annual finances with that..

    ***feeling so very frustrated I cant work it out myself without getting it confused and the numbers coming up on online calculator dont look right and I cant figure where Im going wrong**
     
    Last edited: Oct 15, 2016
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  16. daisybell

    daisybell Senior Member

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    I just estimated the income stuff... too hard otherwise.
     
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  17. taniaaust1

    taniaaust1 Senior Member

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    Im trying to estimate it.. hence the rounded number i was using when Im trying to use calculator, I couldnt transfer demimal points and non rounded number onto the online calculator to nearest $10 I was trying to use as it wouldnt allow me to just cut and paste it in.

    Thing is one of the income numbers seemed to be "out by tens of thousands of dollars" compared to the other one and I couldnt figure out what Ive got wrong. Made no sense at all.

    eg I got $19210 for a yearly amount every time I'm trying to work it out and my brain is tellling me it should be bigger (I dont know how much bigger) then the $33500 if my brain is making any sense of it. (so that is AT LEAST 14K wrong or maybe it is right and Im preceviing figure wrong..it could be 30K out, I've not a clue .. the answer could be double or triple the actual annual numbers Im getting cause I dont seem to be getting the maths right).

    Having such brain confusion with the figures (possibly 10s of thousands out) I cant even estimate it.
    ..

    "Later, if you have questions, suggestions, concerns, or complaints about the study or you want to get additional information or provide input about this research, you can contact the researcher, Stephanie McManimen (773-325-4962, smcmanim@depaul.edu) "

    maybe I can contact them with the fortnightly figures and see if they help me come up with the annual amounts to put on form. they need a form help person.
     
    Last edited: Oct 15, 2016
  18. taniaaust1

    taniaaust1 Senior Member

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    I just mailed them and hope they can help with my maths so I can do form.. I tried to get my potential earning based on me at one stage working 60hrs a week in a job which pays around $23-24 per hour and was coming up with a yearly potential earning of only $1288 which is obviously way out (this is what I mean by I cant even estimate as I can see my numbers are so very wrong but cant figure out what Im doing wrong).

    Can anyone tell me if there is other questions on that form if I can get some help to get beyond that first page which will probably get me stuck to?? (things i need good memory for or to work out?) or is the form easy going from there?

    Obviously Im not gifted like the rest of you lol. Im just a ME dunce and frustrated. :bang-head: when it comes to doing forms
     
    Last edited: Oct 15, 2016
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  19. daisybell

    daisybell Senior Member

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    The finances bit is probably the trickiest.
     
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  20. taniaaust1

    taniaaust1 Senior Member

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    thanks that's good to know. I think my elderly friend is going to be back from interstate sometime in coming week so I may be able to ask for his help, he's the one who usuallly helps me sort my bank stuff out (if I dont forget about this form entirely by then).
     

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