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  1. trudeschei
    Post

    2021 Pan-Europe ME Patient Survey (EMEA)

    The survey is now published through European ME Alliance: https://www.europeanmealliance.org/documents/emeaeusurvey/EMEAMEsurveyreport2024.pdf We...
    Post by: trudeschei, Apr 11, 2024 in forum: Advocacy Projects and Campaigns
  2. trudeschei
    Post

    Preprint Assessing Functional Capacity in ME/CFS: A Patient Informed Questionnaire, 2023, Sommerfelt et al

    We are very aware of the cumulative aspect of PEM. I have ME myself, and the best analogy I know is having a current account and a credit card...
    Post by: trudeschei, Oct 16, 2023 in forum: ME/CFS research
  3. trudeschei
    Post

    Preprint Assessing Functional Capacity in ME/CFS: A Patient Informed Questionnaire, 2023, Sommerfelt et al

    We have allready talked to researchers who want to use FUNCAP in upcoming studie, so it will probably tested soon. We have had positive feedback...
    Post by: trudeschei, Sep 29, 2023 in forum: ME/CFS research
  4. trudeschei
    Post

    Preprint Assessing Functional Capacity in ME/CFS: A Patient Informed Questionnaire, 2023, Sommerfelt et al

    Here is the preprint. https://www.preprints.org/manuscript/202309.2091/v1
    Post by: trudeschei, Sep 29, 2023 in forum: ME/CFS research
  5. trudeschei
    Post

    Preprint Assessing Functional Capacity in ME/CFS: A Patient Informed Questionnaire, 2023, Sommerfelt et al

    No, we are not setting a cut-off score for being able to work etc. The questionnaire looks at various domains, and having a low score in certain...
    Post by: trudeschei, Aug 17, 2023 in forum: ME/CFS research
  6. trudeschei
    Post

    Severe and Very Severe Myalgic Encephalopathy/Chronic Fatigue Syndrome ME/CFS in Norway: Symptom Burden and Access to Care 2023 Sommerfelt et al

    That is a good question. In Norwegian, the phrase used was "gå en kort tur". The word "tur" strongly implies that the walking takes place outdoors...
    Post by: trudeschei, Feb 14, 2023 in forum: ME/CFS research
  7. trudeschei
    Post

    Severe and Very Severe Myalgic Encephalopathy/Chronic Fatigue Syndrome ME/CFS in Norway: Symptom Burden and Access to Care 2023 Sommerfelt et al

    I am very happy to see this published in a peer reviewed journal. We did the survey in 2018, and published a large report on the Norwegian ME...
    Post by: trudeschei, Feb 13, 2023 in forum: ME/CFS research
  8. trudeschei
    Post

    Why are the majority of pwME rarely mentioned?

    From the IOM report: "Symptoms can be severe enough to preclude patients from completing everyday tasks, and 25-29 percent of patients report...
    Post by: trudeschei, Feb 6, 2023 in forum: General Advocacy Discussions
  9. trudeschei
    Post

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

    <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.
    Post by: trudeschei, Sep 27, 2022 in forum: Advocacy Action Alerts
  10. trudeschei
    Post

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

    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...
    Post by: trudeschei, Sep 27, 2022 in forum: Advocacy Action Alerts
  11. trudeschei
    Post

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

    Comments are always welcome, even though we cannot always accomodate all. The part of this survey that is about function has been trialled in...
    Post by: trudeschei, Sep 26, 2022 in forum: Advocacy Action Alerts
  12. trudeschei
    Post

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

    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...
    Post by: trudeschei, Sep 25, 2022 in forum: Advocacy Action Alerts
  13. trudeschei
    Post

    2021 Pan-Europe ME Patient Survey (EMEA)

    No, it is not published yet. We had very few respondents from English speaking countries. Norway (with a population of 5 million) had 3000...
    Post by: trudeschei, Sep 25, 2022 in forum: Advocacy Projects and Campaigns
  14. trudeschei
    Post

    Preprint Assessing Functional Capacity in ME/CFS: A Patient Informed Questionnaire, 2023, Sommerfelt et al

    If anyone wants to send me ideas or comments on the subject, they are gratefully received :) My email is: trude.schei@hotmail.com
    Post by: trudeschei, May 16, 2022 in forum: ME/CFS research
  15. trudeschei
    Post

    Preprint Assessing Functional Capacity in ME/CFS: A Patient Informed Questionnaire, 2023, Sommerfelt et al

    Sorry for the late answer, I am not on this forum that much - too many things to keep track of, at times, and having a bad period, ME wise. We...
    Post by: trudeschei, May 16, 2022 in forum: ME/CFS research
  16. trudeschei
    Post

    Preprint Assessing Functional Capacity in ME/CFS: A Patient Informed Questionnaire, 2023, Sommerfelt et al

    This is - so far - an informal project, and a work in progress. We are not - at the moment - trying to make the perfect form. We are merely - for...
    Post by: trudeschei, Mar 17, 2022 in forum: ME/CFS research
  17. trudeschei
    Post

    What paper found 25% of patients are housebound/bedbound?

    We are working on the data. Professor Arild Anglesen is doing this in his spare time, and I have ME, and am doing this with my spare energy... The...
    Post by: trudeschei, Feb 21, 2022 in forum: ME/CFS research news
  18. trudeschei
    Post

    Studies on mild, moderate and severe ME/CFS

    Norwegian survey from 2020...
    Post by: trudeschei, Feb 20, 2022 in forum: ME/CFS research news
  19. trudeschei
    Post

    What paper found 25% of patients are housebound/bedbound?

    In Norway we have don several large patient surveys. A survey about course of illness in 5822 respondents from all of Norway. We asked about the...
    Post by: trudeschei, Feb 20, 2022 in forum: ME/CFS research news
  20. trudeschei
    Post

    2021 Pan-Europe ME Patient Survey (EMEA)

    We closed the survey today for all languages. We received 12.197 responses in total. Some of those will be incomplete, but we are still well...
    Post by: trudeschei, Aug 17, 2021 in forum: Advocacy Projects and Campaigns
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