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Open Norway: Haukeland university hospital (Fluge/Mella) seeking ME-patients nearby Bergen to wear fitbit for 6 months

Discussion in 'Recruitment into current ME/CFS research studies' started by Kalliope, Oct 2, 2019.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

    Activity registration in ME/CFS
    Would you like to be part of developing new methods for future clinical trials?

    We are seeking participants for a study to test the activity device Fitbit Charge 3 for measurement of physical activity in patients with ME/CFS.

    The study doesn't entail any intervention or clinical treatment, but its focus is to find better measurement methods for future clinical trials.

    The study will run for 6 month and entails you wearing the Fitbit device every day for this period. We also ask of you to fill out forms about symptoms and functional level during the study.

    We'd like to hear from you if you
    - are diagnosed with ME/CFS
    - live on the west coast
    - are able to meet three times at Haukeland University Hospital during the study

    The research group for ME/CFS at Haukeland University Hospital/UiB by Øystein Fluge and Olav Mella

    Do you want to know more? Send your name and phone number by Oct. 20th to kari.sorland(at)helse-bergen.no - and we'll be in touch!

    The study is supported by the Norwegian ME Association

    MarcNotMark, ahimsa, inox and 21 others like this.
  2. Sean

    Sean Moderator Staff Member

    Six months? We have it on the highest authority that it would be 'too much of a burden for patients' to wear one for even a week.

    Anna H, Sarah94, mango and 17 others like this.
  3. wingate

    wingate Established Member (Voting Rights)

    Too bad they probably won't be able to send me one in the mail ;)

    I'd do it.
    inox, Simbindi, Barry and 5 others like this.
  4. andypants

    andypants Senior Member (Voting Rights)

    I don't think they'll have any trouble getting enough participants, after all Haukeland Hospital is in Norway's second largest city and the research team enjoys a high level of trust in the community. Plus many patients are already connected to the hospital through their specialist/diagnostic service :)
    Sean, lycaena, MarcNotMark and 11 others like this.
  5. NelliePledge

    NelliePledge Moderator Staff Member

    UK West Midlands
    Hopefully this will set a standard for objective measures that future studies will need to follow in order to have a shred of credibility.
    Sean, MarcNotMark, inox and 11 others like this.
  6. Kalliope

    Kalliope Senior Member (Voting Rights)

    Yes, this will be interesting. I'm not aware of any similar documentation/studies on activity levels. Will be interesting to see how it fluctuates when there's no interventions. Wish there was a simple way to monitor cognitive issues at the same time as well.
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Merged thread

    Study Description
    Brief Summary:
    We will assess the feasibility of activity monitoring armbands for continuous measurement of physical activity level in ME/CFS patients, during 6 months follow-up. The main purpose is to assess if continuous measurement of activity level may be incorporated in outcome measures in future clinical interventional trials.

    Detailed Description:

    The purpose is to assess feasibility of activity monitoring armbands for continuous measurement of physical activity level in patents with Myalgic Encephalopathy/ Chronic Fatigue Syndrome (ME/CFS), during 6 months follow-up.

    We will assess which physical activity parameters that best seem to reflect the participant's own perception of activity level, such as mean number of steps per 24 hours.

    We will investigate the agreement between continuous activity measurements by activity armbands, and self-reported questionnaires for health-related quality of life (SF-36 ver.2) and for ME/CFS symptoms (DSQ-SF).

    We will assess the agreement between activity monitoring by armbands, and previously validated activity monitoring bracelets for 5-7 consecutive days, at baseline, at 3 months and at 6 months follow-up.

    full details here:
    Last edited by a moderator: Dec 13, 2019
    Sean, rvallee, NelliePledge and 3 others like this.

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