Please note: This page is under construction.
This exciting new project – Dialogues for a neglected illness – will be a film created by Natalie Boulton and Josh Biggs that has been financed by a grant from the Wellcome Public Engagement Fund.
The ME Association fully supports the project’s aims and Dr Charles Shepherd, Hon. Medical Adviser to the ME Association, has recorded interviews for the series.
- Natalie and Josh were responsible for the ground-breaking Voices from the Shadows documentary in 2011. The film is still available to watch for free from the Voices website.
The new project will cover different aspects of ME/CFS from a variety of perspectives, and include interviews with, and input from, expert clinicians, researchers, patients, carers and advocates.
Final publication is expected in 2021 with a public launch being hosted by the M.E. Biobank – whose team are consulting on the project – at the London School of Hygiene & Tropical Medicine.
In the meantime, you can now watch several videos from Dialogues for a neglected illness by visiting their new website. We have also featured them below.
Films from the new project that are now available to watch include:
- An Introduction to ME/CFS,
- Post-Exertional Malaise,
- Graded Exercise Therapy,
- Paediatric ME/CFS, and
- A video discussing Severe M.E. will released shortly.
An Introduction to ME/CFS
In this new video, clinical, research, and patient experts explain what we know about ME/CFS, the controversies and stigma still present in the field, how this disease affects the patient community, and where we go from here.
The video features interviews with Dr Charles Shepherd, Dr Luis Nacal, Professor Jonathan Edwards, Caroline Kingdon, Dr Nigel Speight, Professor Mark VanNess, Dr David Systrom, Dr David Tuller, Dr Nina Muirhead, Dr Eliana Lacerda, Professor Brian Hughes, and Naomi Wittingham who has had the disease for 30 years.
Graded Exercise Therapy
The following two videos from the project were released in 2019 and include discussion of the research into Cardio-Pulmonary Exercise Testing (CPET) in ME/CFS.
In the first video, researchers from America critically review exercise in ME/CFS and, in the second video, they are joined by other experts who discuss graded exercise therapy (GET) and why it is unsuitable for people with this condition.
The videos are well worth watching and reinforce the ME Association’s own position on this most controversial form of activity management.
|Understanding Graded Exercise Therapy|
“Anybody that is thinking of prescribing exercise for ME/CFS without understanding how that person’s physiology functions, is more likely to do them harm than good.”
Dr Chris Snell, Former chair Chronic Fatigue Syndrome Advisory Committee (CFSAC), to the US Secretary of Health.
|“Any sustained aerobic activity is not helpful in ME/CFS. In fact, it exacerbates the illness. And so, there is going to have to be a complete rethinking of how exercise therapy is done with ME/CFS because clearly aerobic conditioning – as is used in many other therapeutic interventions – is not going to work.”|
Dr Mark VanNess, Professor and Co-chair, Health, Exercise and Sports Sciences, University of the Pacific, California.
|“The National Institutes of Health collaborative research centres are using exercise as a stressor to elicit symptoms and post-exertional malaise so that it can be studied. |
“It should not be used as a therapy. It’s provocative. Deconditioning does not cause the problem and exercise won’t solve it…
“You cannot recondition an energy system than is inherently broken and trying to do so will cause harm to your patients and make them worse.”
Staci Stephens, Founder Workwell Foundation and Co-Vice President International Association ME/CFS.
- Read more about ‘Dialogues for a neglected illness‘ by visiting the new Dialogues website.
This next video in the series on exercise, also discusses the problems with psycho-social research and the PACE trial in ME/CFS. It features Brian Hughes, Professor of Psychology, N.U.I Galway, and Professor Jonathan Edwards, University College London.
For more information about the PACE trial and critical appraisals of research into graded exercise therapy and cognitive behavioural therapy in ME/CFS, please visit the research section of the MEA website.
The ME Association now has a dedicated page on its’ website for the project and is hoping to help distribute and promote the project when it is completed in 2021.
We would like to thank everyone who has taken part in the project. It promises to offer valuable insight into the lives of people trying to manage ME/CFS.
- Watch recommended video interviews from two world-renowned paediatric experts who go head-to-head discussing ME/CFS in children and young people and also focus on managing those severely affected.
- Dr Peter Rowe (Professor of Paediatrics and Director of the Children’s Center Chronic Fatigue Clinic at the Johns Hopkins University School of Medicine, Baltimore), and Dr Nigel Speight (Consultant Paediatrician with a long standing special interest in ME, based in Durham and Hon. Medical Adviser to the ME Association).
The ME Association
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