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Closed England & Wales: Survey: Involving adults with severe ME/CFS symptoms in developing a NICE guideline on ME/CFS

Discussion in 'Recruitment into current ME/CFS research studies' started by Andy, Nov 14, 2019.

  1. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Survey, https://apps.mhs.manchester.ac.uk/s...?PageNumber=1&SurveyID=m4KKln9MH&Preview=true
    Participant Information Sheet, https://www.research.manchester.ac.uk/portal/files/145778415/Our_PIS_GDPR_UoM_oct_1_verion.pdf

     
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  2. Wonko

    Wonko Senior Member (Voting Rights)

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    It should be noted that it is required to give them permission to contact you, at any point in the future, in order to be allowed to complete the questionnaire (Q6).

    If you do not wish, for any reason, to have anyone contact you regarding this then they will not allow you to participate.
     
  3. alktipping

    alktipping Senior Member (Voting Rights)

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    just filled it in they repeat a couple of questions did someone from the dwp show them how to write questionaires lol . I hope some one with more mental energy can make much more informed answers to the question about improving our experiences with the medical profession .
     
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  4. Trish

    Trish Moderator Staff Member

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    I filled it in. It took me about an hour. Exhausting!

    Either my mind is playing tricks on me and I have blanked my memory of part of the form, or they didn't ask my name or contact details. Is it me or them? I do remember filling in my age and gender.
     
  5. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    I know that a paper version to prepare in advance before an upload should exist and should be made available.

    Most SA are both too physically and cognitively challenged to cope with on online only!
     
  6. Trish

    Trish Moderator Staff Member

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    Paper version would be no use to me. My writing becomes illegible after a sentence or 2 and my hand muscles give up. I can touch type, lying well supported on a sloping pillow in bed, and just ploughed through it in one go, writing very short answers. I tried to get our tea afterwards, and kept bumping into things and couldn't think of simple words. My arm pain has shot up. I need to stop.
     
  7. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    Maybe a printed copy to read and think about first would have been useful? Then after thinking it through I could have planned and paced myself better.

    Emotionally I found it very provoking and I felt awful after completing it.
     
  8. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Have capture the questionnaire off the web for pre filling in on line.
     

    Attached Files:

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  9. Gecko

    Gecko Senior Member (Voting Rights)

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    Impressed you got through it!

    Not you, name and contact details aren't asked for - I presume they've just used some standardised GDPR questions. Have pointed this out in an email, as well as asking whether the questions can be made non-mandatory as sadly I do think it's very inaccessible to the target group, but does ask important questions that could really help guide the guideline committee considering just how little evidence there is around severe ME.

    If anyone reading this is finding it overwhelming, I do imagine even just yes/no answers will be appreciated if you cannot do more.
     
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  10. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Is there any way of answering this page by page, and storing answers in between sessions?
    59 questions is an awful lot to answer in one go.

    I am still crashed after an unusual MRI 11 days ago, and cannot contemplate completing this currently. I wanted to scan what was required before starting but this required innovative thinking.

    It is overwhelming @Gecko and I will need to come back to it.
     
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  11. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    I believe you can save in between filling it in.
     
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  12. Binkie4

    Binkie4 Senior Member (Voting Rights)

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  13. Gecko

    Gecko Senior Member (Voting Rights)

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    Aye looks like there's a save button, but this doesn't appear to give you a link or anything to go back in later, so I'd leave the tab with the survey open and not close it down in between trying to work on it.
     
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  14. Binkie4

    Binkie4 Senior Member (Voting Rights)

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  15. Trish

    Trish Moderator Staff Member

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    The sections on drugs and other treatments were very quick. I've had so little. My responses were briefer than I would have liked, but I knew I don't have the stamina to do it justice. I was afraid to leave it unfinished as I might never get back to it. My ME is at the upper end of severe. I don't see how a very severe sufferer could do it. They would have to get a carer to fill it in on their behalf.
     
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  16. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    This is an important questionnaire with data requested by the NICE Guideline development Group and chair Dr. Peter Barry. This request is to address the issue of the Severely Affected who have to date been marginalised, and whose collective voice has not been heard.

    I intend to contact Keith G at Manchester to ask if the paper questionnaire can be formally made available/ offered in addition to the website so 'suitable adjustments for SA and disability' are effectively covered. Required to satisfy the DD Act.

    This will allow carer's or advocates for the SA to receive comments dictated or scribed and to upload on behalf of SA's too unwell to cope with sitting and doing an on line version themselves.
    I believe the target audience of the very severe will be captured better with this added facility.

    I don't have ME but struggled with the online version, ( done but with blank info) - particularly as you need to capture the whole extent of the info requested so you can respond to individual or overlapping questions efficiently.
     
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  17. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Just to warn, the save function doesn't work for me.

    First, it will only allow you to attempt to save once you have provided an answer to all the questions on the page you are on, and then once I did that and clicked save I didn't receive any confirmation that it was saved, or how to return to my save.

    So, to test, I closed the tab the survey was in and went back to it via the link above, and I was back to the start again. Assuming that is the experience of all, not so severe friendly unfortunately.
     
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  18. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Definitely leave the tab open then, as @Gecko suggests above.
     
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  19. JaneL

    JaneL Senior Member (Voting Rights)

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    That’s really helpful, thanks.

    I tried the save function and leaving the tab open but unfortunately neither of these options worked for me. I got halfway through the survey which was a lot of effort and then lost everything after taking a break :(

    I will re-do it but next time I will prepare my answers in a separate document where I know it will be saved and then copy and paste them over into the survey. I suggest others do the same. The survey is a big effort but it will provide really valuable evidence for the NICE guideline review so it would be great if lots of people can manage to fill it in.
     
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  20. Wonko

    Wonko Senior Member (Voting Rights)

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    So...it might have been an idea if they had designed it in a way that allowed it's target audience to complete it?

    Not the first time I have seen this 'error' on questionnaires that they allegedly want pwME to fill in.
     

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