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Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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If you could write a question for an ME/CFS survey, what would it be?

Discussion in 'General ME/CFS Discussion' started by Quemist, Apr 19, 2017.

  1. Quemist

    Quemist

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    I'm considering compiling a survey to quantify some symptoms of ME/CFS.
    What oddball questions would you ask if you could ask anything?
     
    belize44 likes this.
  2. Diwi9

    Diwi9 Senior Member

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    I would bet that reviewing some of Leonard Jason's work from DePaul University could be a great guide for measures already used. Also, there are many polls on PR that could also guide you: can you tolerate alcohol; how many years since you've had a cold/flu...

    I'm curious about some of the screens Hornig/Lipkin used in their classic/atypical screen and what Avindra Nath is going to be using.
     
  3. Joh

    Joh Inactivist

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    Personally I'd be interested in how many ME sufferers have the constant flu feeling. I feel everyday like I have the flu (for 14 years) and this is the worst symptom for me.
     
  4. *GG*

    *GG* senior member

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    I am attaching some paperwork that I would submit to my Dr periodically to document my disability, some good questions in this form.

    GG

    Edit: Maybe not good questions for a survey.
     
  5. Cheesus

    Cheesus Senior Member

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    Similar to this, I would be very interested to know how regularly people with ME experience infections. Anecdotally, it seems some people experience them much more regularly than the average person, whereas others are all but immune to infections.

    I have also heard that some people move between these two states, so if you can capture that too then you can have some extra brownie points.
     
    markielock likes this.
  6. markielock

    markielock staying independent, one day at a time

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    I agree with @Cheesus. I would add to this and ask if they do experience infections, do they experience them more regularly after being more run down. I always get infections in my ears, wisdom teeth etc... after getting run down!

    Another thing I'd ask is: do you experience a massive dip in health after using antibiotics
     
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I used to get these long ago - in my early M.E. days, I think. I'd be careful if I were you. I'm going through my diaries but it's a long haul. My wisdom teeth are rotting away now - I've been waiting for months to get on someone's list! But maybe it's best to wait until they stop using those damned poisonous fillings...

    But then again - how do you avoid getting run down when you've got M.E., when your immune system has turned against you?
     
  8. Snow Leopard

    Snow Leopard Hibernating

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    "Do you think the questions used in fatigue/pain/anxiety/depression questionnaires are straightforward and reliable for people with ME or CFS?"
     
    ladycatlover likes this.
  9. Alvin2

    Alvin2 If humans were rational...

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    What is the goal of this questionnaire?
     
    Basilico and Snow Leopard like this.

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