“Dialogues for a neglected illness,” a Wellcome Project by Natalie Boulton and Josh Biggs.
This exciting new project – Dialogues for a neglected illness – is a series of films created by Natalie Boulton and Josh Biggs. It 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, and Dr Nigel Speight, Hon. Medical Advisers to the ME Association, have contributed to the project and 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 covers different aspects of ME/CFS from a variety of perspectives, and includes 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 some of them below.
Watch the films and Help Raise Awareness
Films from the new project that are now available to watch. If you can then please share them on your social media networks.
You will find a list of contributors next to each video in the series, and links to additional information that can help you to explain each of the subjects to other people:
- An Introduction to ME/CFS – Explains what we understand about the pathology of ME, persisting controversies and why they are misguided and how this disease affects the patient community.
- Severe and Very Severe ME/CFS – This is the latest video in the series that shines a much-needed light on the worst forms of the disease.
- Post-Exertional Malaise – Two videos that explain this characteristic and potentially devastating symptom of ME.
- Graded exercise therapy – Explains the controversy and the research that has determined its unsuitability as a treatment for people with ME. We have uploaded these videos to the ME Association website (see below).
- You also might like to watch two older but still very relevant videos about Young People with ME. They feature discussions on the subject from two paediatric experts, Professor Peter Rowe from America and Dr. Nigel Speight (who is a medical adviser to the ME Association).
An Introduction to ME/CFS
In this introductory 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.
Severe and Very Severe ME/CFS
This powerful and informative video describes what life can be like for people who are suffering the worst forms of this disease. It is highly recommended, and comes with suggestions from clinical experts on how to best manage people who are really struggling for help and support.
“The most important thing that a doctor can do for a patient is to really recognise how devastating and life-changing this illness is. It’s almost like being in a major trauma; a road-traffic accident, or spinal injury, or a big burn, or explosion.
“You suddenly go from having a very normal life that you are all happy with, and over a course of weeks or months, you lose everything. And it puts pressure on your job, it puts pressure on your relationships, puts pressure on the rest of your health, your family, your economic situation.
“My parents were at that point visiting me every week or every other week and they could see that I couldn’t keep up looking after the house, looking after the children. And to begin with I went to their house for 4 days and I ended up there for 4 months.
“They had to do all of the food preparation, they had to help me even with getting changed, basic self-care, everything – bringing me water – all the basic needs. I needed care.”
Dr Nina Muirhead, M.E. patient, NHS Dermatology Surgeon, Chair CMRC Medical Education Group.
“About 25% of M.E. patients are so severely affected that for most of the time they are housebound and they need very extensive support.
“All the standard domestic chores have to be taken over either by other family members or by carers.
“Many patients, if they exert themselves to the slightest degree, suffer post-exertional malaise, and that incapacitates them even further.
“Very-Severe M.E. can be likened to someone with terminal cancer in terms of the degree of incapacity and the degree of symptomatic suffering they’re going through.”
Dr William Weir, Consultant in Infectious Diseases, Member of the NICE ME/CFS Clinical Guideline Committee.
“I visit people who often lie in a darkened room, and they might have earplugs in. They are very, very sensitive to noise, to touch. Any kind of stimulus provokes an unpleasant reaction.
“Eating. Their diet is often severely restricted. And for many of them, this will have been their life for years. For decades sometimes.”
Caroline Kingdon, Research Fellow, Research Nurse, M.E. Biobank Lead, London School Hygiene and Tropical Medicine.
Other contributors include Dr Charles Shepherd, Dr Nigel Speight, Dr Luis Nacal, Catherine Hale (Founder Chronic Illness Inclusion Project), M.E. patients and their carers: Tom and his mother, Vera Kindlon, Rob and his son, and Naomi Whittingham.
The video also features some of those patients who have died; Lynn Gilderdale, Bob Courtney, Anne Ortegren, and Sophia Mirza (may they rest in peace).
Post-Exertional Malaise (PEM) is an abnormal response to exertion (physical or mental). It involves both an exacerbation of symptoms, loss of stamina and/or reduction in functional capacity.
It can be caused by any activities beyond those normal tolerated, whether a single event or a period of slightly ‘overdoing it’. These could involve:
- Physical stressors such as exercise, activities of daily living, orthostatic stress.
- Cognitive or mental activities and social interactions.
There are two videos that explain this characteristic and potentially devastating symptom of M.E. The first is a longer video (15mins) and the second a condensed version (5mins).
Contributors include, Dr Luis Nacal, Dr Charles Shepherd, Dr Nigel Speight, Dr Christopher Snell, Staci Stephens, Prof. Mark VanNess, Prof. Todd Davenport, Dr Nina Muirhead, Dr David Systrom and Grace, an M.E. Biobank patient.
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. Both videos have been uploaded to the ME Association website and can be watched below.
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 it when it is completed in 2021.
We would like to thank everyone who has taken part Dialogues. 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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