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 – 2018-21. The project is led by Natalie Boulton, working with Josh Biggs, a professional editor and cameraman. It is evolving as we work on it, adapting to the new conditions caused by a pandemic! Members of the Cure ME team at the London School of Hygiene and Tropical Medicine – Luis Nacul, Eliana Lacerda and Caroline Kingdon – are clinical and research consultants for the project and will host an event in 2021. All medical and scientific input is checked with the professionals interviewed before being made public. Advice and feedback is also provided by patients and carers at all stages, as an integral part of the project. Particular thanks is given to patient/carer advocates – Mary Dimmock, Graham McPhee, Valerie Eliot Smith, Sue Waddle and Rob.
The collection of videos covers a variety of topics, giving a multi-faceted understanding of the disease from the perspectives of medical professionals, exercise scientists, and research professionals specialising in ME/CFS. Importantly it also features the experiences of patients and carers – with about a dozen patients interviewed, including donors from the UK ME/CFS Biobank and patient advocates. The project is a resource which appears to be filling a gap, as the videos are being hosted or linked to by UK charities (ME Research UK and ME Association) and included in medical education resources both 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)
It 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.