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 If you have questions or want to make a suggestion, please go to the Librairy Discussions thread.
