Dialogues for a neglected illness or Dialogues for ME/CFS is the end result of years of hard work undertaken by my partner Natalie Boulton and funded by an award from the Wellcome Public Engagement Fund. The project, begun in 2018, has been led by Natalie and draws on a wide range of medical professionals, patient activists and patients. As the work progressed it has had adapt to the new conditions caused by the COVID pandemic. All the medical and scientific input included has been checked with the professionals interviewed before being made public. Advice and feedback has also been provided by patients and carers at all stages, as an integral part of the project.
The collection of eight videos covers a variety of topics related to ME/CFS, giving a multi-faceted understanding of the disease from the perspectives of medical professionals, exercise scientists, and research professionals specialising in the disease. Importantly it also features the experiences of patients and carers – with about a dozen patients interviewed. The project is intended as a resource and 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. As such patients can use it both to increase their own understanding and those of their families, friends and carers, as well as to help doctors, medical students, physios, OTs, social workers, carers, educators and research professionals, to understand more about this disease and the issues involved.