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2021 Pan-Europe ME Patient Survey (EMEA)

Discussion in 'Advocacy Projects and Campaigns' started by Wyva, May 11, 2021.

  1. trudeschei

    trudeschei Established Member (Voting Rights)

    Messages:
    35
    Location:
    Holmsbu, Norway
    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 beyond out goal of 10.000 responses. Thanks to everyone who shared, and to everyone who answered!
     

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    Joh, rainy, Chezboo and 11 others like this.
  2. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    3,617
    Was this ever published? If so, does anyone have a link.
     
    rainy likes this.
  3. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    10,669
    Location:
    UK West Midlands
    @trudeschei
     
    rainy, Lilas and Dolphin like this.
  4. trudeschei

    trudeschei Established Member (Voting Rights)

    Messages:
    35
    Location:
    Holmsbu, Norway
    No, it is not published yet.
    We had very few respondents from English speaking countries.
    Norway (with a population of 5 million) had 3000 responses, while there were only 900 form the UK (with an estimated 250000 ME patients) and around 500 from the US. With the help og OMF we are now trying to reach the US and the UK, but the response is lukewarm this time round as well. I am at a loss when it comes to reach these these patients :(

    Please share!

    https://no.surveymonkey.com/r/courseofillness22

    Here is a page on our website about the survey as well:
    https://www.me-foreningen.no/course-of-illness-survey-2022/
     
    Lilas, Dolphin and CRG like this.
  5. Trish

    Trish Moderator Staff Member

    Messages:
    43,328
    Location:
    UK
    Have you tried UK ME organisations? I think the ME Association and Action for ME might be willing to encourage their members to do the survey.
     
    Lilas, NelliePledge, Dolphin and 2 others like this.

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