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  1. Nightsong
    Thread

    Preprint How Long is Long COVID? Evaluation of Long-Term Health Status in Individuals Discharged from a Specialist Community Long COVID Service, 2024, Sivan+

    Background: Post COVID-19 syndrome or Long Covid (LC) is a novel fluctuating condition with a protracted course in some patients. Specialist LC...
    Thread by: Nightsong, Sep 12, 2024, 4 replies, in forum: Long Covid research
  2. Andy
    Thread

    Review A review of Patient Reported Outcome Measures (PROMs) for characterizing Long COVID (LC)—merits, gaps, and recommendations 2024 Ejalonibu et al

    Abstract Background Individuals may experience a range of symptoms after the clearance of the severe acute respiratory syndrome coronavirus 2...
    Thread by: Andy, Aug 27, 2024, 1 replies, in forum: Long Covid research
  3. bobbler
    Thread

    Obtaining Patient Priorities in a Multiple Sclerosis Comprehensive Care Center: Beyond Patient-Reported Outcomes, 2020, Miller et al

    This thread has been split from UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023...
    Thread by: bobbler, Jun 4, 2024, 4 replies, in forum: Other health news and research
  4. SNT Gatchaman
    Thread

    Impact of long COVID on health-related quality-of-life: an OpenSAFELY population cohort study using [PROMs], 2024, Carlile et al.

    Impact of long COVID on health-related quality-of-life: an OpenSAFELY population cohort study using patient-reported outcome measures OpenPROMPT...
    Thread by: SNT Gatchaman, May 1, 2024, 0 replies, in forum: Long Covid research
  5. Hutan
    Thread

    The MSIS-29 and SF-36 as outcomes in secondary progressive MS trials, 2022, Strijbis et al

    Abstract Background: Patient-reported outcome measures (PROMs) are often used in clinical research, but little is known about their performance as...
    Thread by: Hutan, Feb 21, 2024, 8 replies, in forum: Research methodology news and research
  6. SNT Gatchaman
    Thread

    Preprint Feasibility characteristics of wrist-worn fitness trackers in health status monitoring for post-COVID patients in remote and rural areas, 2023, Wiebe

    Feasibility characteristics of wrist-worn fitness trackers in health status monitoring for post-COVID patients in remote and rural areas Madeleine...
    Thread by: SNT Gatchaman, Dec 8, 2023, 2 replies, in forum: Long Covid research
  7. SNT Gatchaman
    Thread

    Myalgic Encephalomyelitis—Chronic Fatigue Syndrome Common Data Element item content analysis, 2023, Slavin, Bateman, Systrom et al.

    Myalgic Encephalomyelitis—Chronic Fatigue Syndrome Common Data Element item content analysis Mary D. Slavin; Hannah M. Bailey; Emily J. Hickey;...
    Thread by: SNT Gatchaman, Sep 13, 2023, 2 replies, in forum: ME/CFS research
  8. Andy
    Thread

    Evaluating the ability of patient reported outcome measures to represent the functional limitation of people living with ME/CFS, 2023, Jones, Gladwell

    Aim To identify activities which people with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) report are impacted by their condition,...
    Thread by: Andy, May 9, 2023, 10 replies, in forum: ME/CFS research
  9. Andy
    Thread

    The modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) patient-reported outcome measure for Long Covid or Post-COVID-19 syndrome, 2022, Sivan

    Abstract Background The C19-YRS is the literature's first condition-specific, validated scale for patient assessment and monitoring in...
    Thread by: Andy, May 24, 2022, 9 replies, in forum: Long Covid research
  10. Andy
    Thread

    In progress: Measuring Health in Children with CFS/ME: Refinement, application and evaluation of new PROM (PEACH) in routine practice, Crawley et al

    Funded study in progress. Abstract: Background: Paediatric Chronic Fatigue Syndrome or Myalgic Encaphalistis (CFS/ME) is disabling and...
    Thread by: Andy, Jun 10, 2021, 16 replies, in forum: Psychosomatic research - ME/CFS and Long Covid
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