Activity monitoring and patient-reported outcome measures in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients, 2022, Rekeland et al

Discussion in 'ME/CFS research' started by SNT Gatchaman, Sep 20, 2022.

  1. Trish

    Trish Moderator Staff Member

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    I think the severity levels on the 2021 NICE guideline are useful for showing how severe ME gets.
     
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  2. Kalliope

    Kalliope Senior Member (Voting Rights)

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    The charity "Fokus på ME" has shared an update from the researchers about the Fitbit-study.

    Oppdatering frå Haukeland om Fitbit-studien september 2022, på norsk:

    google translation: Update from Haukeland on the Fitbit study September 2022...

    quotes:

    The purpose of this study was to investigate whether it is feasible and useful to use activity bracelets to monitor variations in activity in a clinical study, as well as to form an impression of natural variation in symptoms and activity level in a group of ME patients over time.

    ...

    The article also describes that the level of activity and the patients' self-reporting fluctuates in many patients over time.

    ...

    The Fitbit study does not say anything about the usual or average number of steps for ME patients; patients with mild ME disease were overrepresented in relation to severe disease, as we would like to see if we could capture greater and lesser variations in function. We also found that the accuracy of step measurement was variable.
     
    Last edited: Sep 30, 2022
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  3. Ariel

    Ariel Senior Member (Voting Rights)

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    I also think the severe ME page is a good development but it's just quite hard (imo) to navigate to. Is it just me? Maybe it would be possible for them to give it more prominence and make it more obvious it's there?
     
  4. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    I imagine this article in English from October 3 is similar:

     

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