Resources.
• Workwell Foundation: focuses on research facilitating an understanding of the biological basis for fatigue and post exertional malaise in ME/CFS and techniques for safe management. https://workwellfoundation.org
• ‘Graded exercise therapy does not restore the ability to work in ME/CFS – Rethinking of a Cochrane review’ Vink, Mark and Vink-Niese, Friso. ‘ IOS Press. Work, vol. 66, no. 2, pp. 283-308, 2020 https://content.iospress.com/articles/work/wor203174?s=09&fbclid=IwAR0ulLHnZ3PJ2xYpd1JTCaj6rGjWSYe_qc5ZGob2sgKUttVgiEJE5DalW2I
• ‘Monitoring treatment harm in myalgic encephalomyelitis/chronic fatigue syndrome: A freedom-of-information study of National Health Service specialist centres in England’
Graham McPhee, Adrian Baldwin, Tom Kindlon, Brian M Hughes. Journal of Health Psychology June 2019
• An interview with Dr David Systrom and Lewellyn King describes the findings from invasive cardiopulmonary testing in exercise intolerant patients with an ME/CFS diagnosis. “.. a phenomenon called internal preload failure – the inability or unwillingness of large veins in the legs, abdomen, and pelvis to push blood up to the right side of the heart – is ubiquitous for ME/CFS patients.”
• Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT Carolyn E. Wilshire, Tom Kindlon, Robert Courtney, Alem Matthees, David Tuller, Keith Geraghty & Bruce Levin BMC Psychology volume 6, Article number: 6 (2018)
• Journal of Health Psychology : Special issue on the PACE Trial – David F Marks July 2017
• Work by David Tuller exposing the PACE Trial: Oct 21, 2015 – TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study Oct 22, 2015 – TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (second installment) Oct 23, 2015 – TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study (final installment)
• “Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes.”
• Forward ME, Oxford Brookes University.Results of Patient Survey, 3 April 2019.
• “Monitoring treatment harm in myalgic encephalomyelitis/chronic fatigue syndrome: A freedom-of-information study of National Health Service specialist centres in England.” Graham McPhee, Adrian Baldwin, Tom Kindlon, Brian Hughes. Journal of Health Psychology 2019 https://doi.org/10.1177/1359105319854532
• Physios for ME: website set up by a group of physiotherapists in the UK with a special interest in Myalgic Encephalomyelitis. https://www.physiosforme.com
With thanks to Graham McPhee, Tom Kindlon and John Peters for their advice on aspects of the PACE Trial and appropriate graphs.