1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 8th April 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Morten group seeking info

Discussion in 'General ME/CFS news' started by Amw66, Jul 10, 2020.

Tags:
  1. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    6,317
    Amw66, Jul 10, 2020
    #1
    sebaaa, John Mac, rvallee and 6 others like this.
  2. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,256
    Location:
    UK West Midlands
    Slightly confused given their links to ME Association why they are reinventing that wheel when MEA have done a lot of work on collecting people’s stories.
     
    NelliePledge, Jul 10, 2020
    #2
    Invisible Woman, Sarah94 and MEMarge like this.
  3. obeat

    obeat Senior Member (Voting Rights)

    Messages:
    682
    It may be to use in their social media campaign to raise funds.
     
    obeat, Jul 10, 2020
    #3
    Invisible Woman, Possibly James May and MEMarge like this.
  4. MEMarge

    MEMarge Senior Member (Voting Rights)

    Messages:
    2,746
    Location:
    UK
    There may also be issues with privacy/consent.

    For example, I understand that the photos of people with ME, collected by MEA cannot be used by other organisations, as when they were supplied it was "for use by MEA".
     
    MEMarge, Jul 10, 2020
    #4
    alktipping, It's M.E. Linda, Invisible Woman and 1 other person like this.
  5. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,256
    Location:
    UK West Midlands
    Right but it would be easy enough to contact them to ask if they agree to use by the Morten group and a lot less time consuming than creating a whole new set of stories.
     
    NelliePledge, Jul 10, 2020
    #5
    Invisible Woman, sebaaa, alktipping and 2 others like this.
  6. Kitty

    Kitty Senior Member (Voting Rights)

    Messages:
    5,347
    Location:
    UK
    The fact that they're saying they'll change people's names suggests this is probably the case. If they wanted them for research purposes, it'd make more sense for them to approach the MEA, as @NelliePledge says.
     
    Kitty, Jul 10, 2020
    #6
    sebaaa, alktipping, MEMarge and 2 others like this.
  7. Trish

    Trish Moderator Staff Member

    Messages:
    52,218
    Location:
    UK
    Trish, Jul 10, 2020
    #7
    MEMarge, sebaaa, alktipping and 9 others like this.
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,582
    Location:
    UK
    what happened with this?
     
    Sly Saint, Mar 27, 2021
    #8
    It's M.E. Linda, MEMarge, Kitty and 1 other person like this.

Share This Page