Dialogues for a neglected illness – or Dialogues for ME/CFS – has been made with an award from the Wellcome Public Engagement Fund – 2018/2021. The project is led by Natalie Boulton, working with Josh Biggs a professional editor and cameraman. It has evolved as we developed it, adapting to the difficult conditions caused by the pandemic! Members of the Cure ME team at the London School of Hygiene and Tropical Medicine – Luis Nacul, Eliana Lacerda and Caroline Kingdon – were clinical and research consultants for the first half of the project, until Covid 19 complicated all our lives too much. All medical and scientific input has been checked with the professionals interviewed, before being made public. Advice and feedback was also provided by patients and carers at all stages, as an integral part of the project. Particular thanks is given to patient and carer advocates – Mary Dimmock, Graham McPhee, Valerie Eliot Smith, Sue Waddle and Rob, who provided much needed input and feedback, frequently at extremely short notice.
This collection, with more videos than were originally envisaged, covers a variety of topics and gives a multi-faceted understanding of the disease from the perspectives of medical professionals, exercise scientists, research professionals specialising in ME/CFS and, importantly, also features the experiences of patients and carers – with about a dozen patients having been interviewed, including donors from the UK ME/CFS Biobank, doctors and patient advocates. The project was being made at the same time as the revised NICE Guideline for ME/CFS was being developed and has been impacted by the long delays in publishing the final NICE Guideline, as well as Covid restrictions.
However, Dialogues now appears to be addressing an important gap in the educational material for ME/CFS, as the videos are being hosted or linked to by major UK charities (ME Research UK, ME Association, Forward ME & Action for ME), international charities, and completed videos were shown at the CMRC conference and Hope4ME&Fibro NI conference before covid lockdown! The project has been included in medical education resources in the UK and the US. (Study PRN continuing professional education, the US ME/CFS Clinicians Coalition, Workwell Foundation and Healthcare Special Issue: Severe ME).
Dialogues is a resource which patients can use to increase their own understanding and those of their families, friends and carers, as well as helping doctors, medical students, physios, OTs, social workers, carers, educators and research professionals, understand more about this disease and the issues involved.