Patients' surveys

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 (Netherlands)
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


“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


ME/CFS Illness Management Survey Results “No decisions about me without me”
ME Association (UK)
2015
Link to survey


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


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 (Netherlands)
A. de Kimpe B. Crijnen J. Kuijper Ir. I. Verhulst Y. van der Ploeg
2016
Link to survey


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

Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes
Oxford Clinical Allied Technology and Trials Services Unit (OxCATTS), Oxford Brookes University (UK)
2019
Link to survey
S4ME tread

Når nøden er størst er hjelpen nærmest borte
Norges Myalgisk Encephalopati Ferening (Norway)
2019
Link to survey
S4ME thread

Zorg voor betere behandeling bij ME. Enquête onder ME-patiënten naar hun ervaringen met behandelingen bij ME
ME/CVS Vereniging - Corsius et al (Netherlands)
2019
Link to survey
S4ME thread


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


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




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