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ME/CFS - course of illness survey, 2022, Norwegian ME Association, open to all

Discussion in 'Advocacy Action Alerts' started by John Mac, Sep 9, 2022.

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  1. John Mac

    John Mac Senior Member (Voting Rights)

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    Post copied from the News from Scandinavia thread

    Survey by the Norwegian ME Association.
    From OMF email:
    This survey is in English and is open for anyone with ME/CFS to participate.
    Caregivers may answer on behalf of patients who are too ill to complete the survey themselves.
    The survey consists of two sections, approximately 10 minutes each. You may pause at any time while filling in the questions and return later. Answers are not final until you submit the survey.
    As the Norwegian ME Association has shared, “We hope that as many as possible take time to answer! We know answering surveys requires a lot of effort, and we greatly appreciate that patients and carers spend valuable time and energy answering.”

    https://www.surveymonkey.com/r/courseofillness22
     
    Last edited by a moderator: Sep 14, 2022
    Midnattsol, Hutan, Kalliope and 7 others like this.
  2. Trish

    Trish Moderator Staff Member

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    I have just done this survey. I think it's the best survey/questionnaire I've seen in terms of homing in on the effects of ME/CFS on daily life.

    I think it would make a good basis for a questionnaire for research and informing clinicians and state benefits agencies about the effects of ME/CFS on daily life, and working out severity levels.
     
    Midnattsol, Hutan, Kalliope and 7 others like this.
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    It's quite a good questionnaire, although for a lot of them I found myself thinking 'it depends'.

    (there are quite a few typos on question 14)

    I don't think it really gets to the bottom of the issue of delayed PEM though and that it is possibly cumulative.
    Also its difficult to get accross the impact the illness has on your daily life when what you can and cant do/ for how long etc has become almost instinctive.
     
    bobbler, Midnattsol, mango and 8 others like this.
  4. NelliePledge

    NelliePledge Moderator Staff Member

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    I thought it was pretty good too
     
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  5. Ravn

    Ravn Senior Member (Voting Rights)

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    Agree with both.

    The most useful ME questionnaire I've seen yet.

    But still with some questions/answer options that I felt were ambiguous or of the 'it depends' type, and I recall thinking some aspects of PEM - possibly the cumulative trigger thing, not sure now - and resulting loss of function weren't fully captured.

    Which shows how devilishly difficult it is to design a questionnaire that accurately captures our experience because these guys put a lot of thought and effort into it. It also shows it is possible to do a heck of a lot better than the rubbish we're usually confronted with.
     
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  6. Shadrach Loom

    Shadrach Loom Senior Member (Voting Rights)

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    No 2021 or 2022 onset option, oddly.

    Edit: no 2021 or 2022 diagnosis option either, although it offers 1930 for any centenarians who dimly recall a frock-coated consultant suggesting poliomyelitis or neuromyasthenia.
     
    Last edited: Sep 15, 2022
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  7. trudeschei

    trudeschei Established Member (Voting Rights)

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    Location:
    Holmsbu, Norway
    Thank you!

    If you have any comments on the function part of the survey, please let me know. It is not cast in stone yet, and we are open to suggestions - and very happy to get them!.
     
    John Mac, Midnattsol, Ravn and 5 others like this.
  8. Lilas

    Lilas Senior Member (Voting Rights)

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    Done ! :rolleyes:
     
    Ravn and Hutan like this.
  9. Hutan

    Hutan Moderator Staff Member

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    It is a good survey; I hope people do it. There was a question early on about symptoms that limit functionality - I don't think it had cognitive difficulties listed. I agree that the problem of cumulative activity is one that is hard to capture. A number of usually unproblematic activities can together cause a problem. There was no mention of infections - they can drastically change function.

    I should have made some notes as I went through, maybe others will be more organised. If a copy of the questions could be provided here, we might be able to give more useful feedback. Also, as Trish says, it might be something that we could print off and take to a doctor or benefit assessor, or use as a base for a statement of limitations.
     
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  10. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I would separate my experiences with others into pre-diagnosis (5.5 years, very little support from anyone) and post-diagnosis.
    The period after diagnosis is much more relevant in finding out attitudes towards ME.

    Also my course is different based on these two time periods.
     
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  11. Ravn

    Ravn Senior Member (Voting Rights)

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    Your responsiveness to suggestions for improvements is wonderfully refreshing, @trudeschei . It makes a welcome change from the defensiveness we too often meet, even from people who are otherwise allies.

    Anyway, it's a while since I filled in the survey. My memory was fading even when I wrote the above post, and it's completely blank now. As @Hutan suggested you could post the list of questions & answer options here for discussion. Or, if a public forum isn't the right place, you're welcome to message me (and I'm sure some others here, too) with a copy. I'd be happy to have another look and provide feedback.

    No promises it will be of any use. Pointing to what isn't working well (for any one individual) is the easy bit. It's a whole lot more difficult, nigh on impossible, to figure out an alternative that would capture not only our own experience well but everybody else's, too.

    Which isn't news to anyone here, witness the various threads on the forum where we've attempted to come up with improved questions & answer options for various questionnaires, with mixed success to date. Always a work in progress.
     
    bobbler, alktipping, Lilas and 4 others like this.
  12. trudeschei

    trudeschei Established Member (Voting Rights)

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    Comments are always welcome, even though we cannot always accomodate all.

    The part of this survey that is about function has been trialled in three rounds in Norwegian Facebook groups, and we have gone through all 800 comments already :)

    We ask about function, and the aim is to find a way to evaluate function levels. The answer alternatives give an idea about cumulative effects of activity - we hope.

    And yes, designing good questions is hard! I have designed several questionnaires by now - and I know how hard it is to get everything right :) Also that no matter how carefully you phrase your questions, someone will not read them as carefully, some will interpret them in a different way than you intended or just plainly misunderstand, and some will think that you should have asked about something different entirely. - It is also completely impossible to cover every eventuality, and open-ended questions seem a good idea, until you have to analyze 7500 of them (I managed 200 per day).
     
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  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    this is just from memory, but the problem i found was that you could only select one answer and there was a choice of something like, 'I am more ill the next day' clearly aimed at PEM, but there was also, something about 'it limits what other activities I can do' which is what I tended to pick. So it might imply that I don't get PEM, which I do.
     
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  14. trudeschei

    trudeschei Established Member (Voting Rights)

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    Location:
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    We very much thing that "limits what I do the next day" means PEM.

    From my own experience - and from other ME-patients' - the amount of PEM Ihave depnds on how far an exertion exeeds my limits - so if I do a lot (like going to a party or other event) I could do nothing the next day, If i do a little less - like going to the shops, it would impact what I would be able to that day, and the next... Both show a degree of PEM.
     
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  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    yes, I get that. My point was that some activities (anything involving over-exertion) limit what I can do on the same day. If I attempt to do more it will affect me even more the next day, and limit what I can do still further.

    I can only dream of doing either of these (certainly the first is a distant memory).
     
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  16. trudeschei

    trudeschei Established Member (Voting Rights)

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    <3
    I know that that is the case for so many. I am one of the lucky ones, and have a life that looks normal (ish) when others see me.
     
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