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Patients' surveys

Discussion in 'Science Library (Read only)' started by Cheshire, Nov 12, 2017.

  1. Cheshire

    Cheshire Senior Member (Voting Rights)

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    Severely affected ME (Myalgic Encephalomyelitis) analysis report on questionnaire
    25% ME Group (UK)
    2004
    Link to survey

    ME 2008: What progress

    Action for ME and Association of Young People with ME (UK)
    2008
    Link to survey

    Ervaringen van de achterban van patiëntenorganisaties met de Gezondheidszorg

    Zorg voor ME/CVS-patiënten (The Nederlands)
    Veer, A.J.E. de, & Francke, A.L.
    2008
    Link to survey

    Managing my M.E. -What people with ME/CFS and their carers want from the UK’s health and social services

    ME Association (UK)
    2010
    Link to survey

    ME/ Chronic Fatigue Syndrome and Social Isolation - Survey Report
    ME/CFS Society (Australia)
    Rebecca Bishop, Monash University
    2010
    Link to survey
    SurveyAustralia2010.png

    “My life stopped...” Voices from Action for M.E.’s 2014 survey

    Action for M.E. (UK)
    2014
    Link to survey

    M.E. Time to deliver - Initial findings of Action for M.E.’s 2014 survey

    Action for M.E. (UK)
    2014
    Link to survey

    The Norwegian ME Association national survey - abridged English version

    Norges Myalgisk Encefalopati Forening (Norway)
    Gunn J. Bringsli, Anette Gilje and Bjørn K. Getz Wold
    2014
    Link to survey
    SurveyNorway2014.png

    ME/CFS Illness Management Survey Results “No decisions about me without me”

    ME Association (UK)
    2015
    Link to survey
    SurveyMEA2015.png

    Close to collapse - An interim report on access to social care and advocacy for people with M.E./CFS

    Action for M.E (UK)
    2015
    Link to survey
    SurveyAfME2015.png

    ME/CFS Patient Survey Report: Ministry of Health Survey Reveals Harsh Reality of ME/CFS Patients in Japan

    Japan ME Association (Japan)
    Mieko Shinohara
    2015
    Link to survey

    Enquête onder ME-patiënten naar hunervaringen met de zorg in Nederland

    Zorg voor ME (The Nederlands)
    A. de Kimpe B. Crijnen J. Kuijper Ir. I. Verhulst Y. van der Ploeg
    2016
    Link to survey
    SurveyNederland2016.png

    A deeply dehumanising experience M.E./CFS journeys through the PIP claim process in Scotland

    Action for M.E. (UK)
    2016
    Link to survey

    Families facing false accusations: results of Action for M.E.’s survey

    Action for M.E (UK)
    2017
    Link to survey

    To be published:

    ME/CFS Health and Welfare Survey
    Emerge (Australia)

    Link to update

    Institutional report

    The Voice of the Patient, A series of reports from the U.S. Food and Drug Administration’s (FDA’s) Patient - Focused Drug Development Initiative

    Center for Drug Evaluation and Research (CDER) U.S. Food and Drug Administration (FDA) (USA)
    2013
    Link to report
    S4ME thread


    Articles

    Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in
    MyalgicEncephalomyelitis/Chronic Fatigue Syndrome
    Bulletin of the IACFS/ME
    Tom Kindlon
    2011
    Link to article
    SurveyKindlon2011.png

    Studies and surveys implicate potential iatrogenic harm of cognitive behavioral therapy and graded exercise therapy for myalgic encephalomyelitis and chronic fatigue syndrome patients

    Frank N.M. Twisk
    ME-de-patiënten Foundation
    2017
    Link to article
    S4ME thread


    Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys
    Journal of Health Psychology
    Keith Geraghty, Mark Hann, Stoyan Kurtev
    2017
    Link to article
    SurveyGeraghty2017.png


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    Last edited: Nov 12, 2017

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