Voices from the Shadows

“Dialogues…” Project

Dialogues for a neglected illness – or Dialogues for ME/CFS is a new project being made with an award from the Wellcome Public Engagement Fund. More information here. The project will consist of a website with a collection of about a dozen new short videos, accompanied by links to existing educational and reference material. It will create a vivid, multi-faceted picture of ME/CFS, covering different aspects of the disease from a variety of perspectives, which will include – diagnosis; various management and treatment issues; Severe ME and the support doctors can provide; key symptoms described by patients in their own words –short and long term experiences and differing severities; patient advocates’ concerns; and the broader historical, social, medical and cultural context for the disease. It will create a resource which patients can use to help their doctors and other health, education and research professionals understand more about this disease and the issues faced.

 

Contributors to the project will include the project clinical and research consultants from the LSHTM: Dr Eliana Lacerda, Dr Luis Nacul and Caroline Kingdon, and also Prof Jonathan Edwards, Dr Charles Shepherd, Dr Nigel Speight, Dr William Weir, Dr David Systrom, Prof Brian Hughes, Prof Mark VanNess, Dr Chris Snell, Staci Stevens, Prof Todd Davenport, Dr Nina Muirhead, Dr Keith Geraghty, George Faulkner, Catherine Hale, Valerie Eliot Smith, David Tuller, patients with ME/CFS who have contributed to the UK ME/CFS Biobank or been diagnosed by an experienced ME consultant and some ME patient advocates.

As well as existing on the ‘Dialogues for ME/CFS’ project website, which is yet to be constructed,  the project, or sections of it, will be available on the Cure-ME (LSHTM), ME Research UK, Workwell Foundation ME Association, Hope 4 Fibro & ME and Health Rising websites, where it can be more easily discovered online. This ‘Voices’ website is a temporary home for some videos and resources for the project, as it is a work in progress.

The main section of the ‘Dialogues for ME/CFS’  project will end with an event hosted by the LSHTM with a video screening, a visiting speaker and a Q& A. This is currently planned for May 2021. However, individual videos covering a variety of subjects will be posted online as soon as they become available. The first videos to be completed, ‘Understanding Graded Exercise Therapy’, are below. The next to be finished will be two videos on ‘Post Exertion Malaise’ and ‘An Introduction to ME/CFS.’

 

 

Understanding Graded Exercise Therapy for ME/CFS

 

Contributors to ‘Understanding Graded Exercise Therapy’.

Members of the Workwell Team: Staci Stevens – Founder of the Workwell Foundation and Co-Vice President: International Association for CFS/ME; Dr Chris Snell – Former Chair of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) to the US Secretary for Health; Mark VanNess – Professor and Co-Chair, Health Exercise and Sport Sciences, University of the Pacific, California.

Brian Hughes  Professor of Psychology, NUI Galway  – Author of Psychology in Crisis 2018 and Rethinking Psychology: Good Science, Bad Science, Pseudoscience 2016

Jonathan Edwards, Professor of Medicine, UCL – currently an advisor on research for the  NICE review of ME/CFS.

Resources.

The Workwell website  contains links to their research and further resources for managing exercise and ME/CFS.

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.” A new interview with Dr Systrom in Belfast will be included in this project later.

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)

With thanks to Graham McPhee, Tom Kindlon and John Peters for their advice on  aspects of the PACE Trial and appropriate graphs.