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. More information here. The project will consist of a website with a collection of about a dozen new short videos, accompanied by links to existing educational and reference material. It will create a vivid, multi-faceted picture of ME/CFS, covering different aspects of the disease from a variety of perspectives, which will include – diagnosis; various management and treatment issues; Severe ME and the support doctors can provide; key symptoms described by patients in their own words –short and long term experiences and differing severities; patient advocates’ concerns; and the broader historical, social, medical and cultural context for the disease. It will create a resource which patients can use to help their doctors and other health, education and research professionals understand more about this disease and the issues faced.
Contributors to the project will include the project clinical and research consultants from the LSHTM: Dr Eliana Lacerda, Dr Luis Nacul and Caroline Kingdon, and also Prof Jonathan Edwards, Dr Charles Shepherd, Dr Nigel Speight, Dr William Weir, Dr David Systrom, Prof Brian Hughes, Prof Mark VanNess, Dr Chris Snell, Staci Stevens, Prof Todd Davenport, Dr Nina Muirhead, Dr Keith Geraghty, George Faulkner, Catherine Hale, Valerie Eliot Smith, David Tuller, patients with ME/CFS who have contributed to the UK ME/CFS Biobank or been diagnosed by an experienced ME consultant and some ME patient advocates.
As well as existing on the ‘Dialogues for ME/CFS’ project website, which is yet to be constructed, the project, or sections of it, will be available on the Cure-ME (LSHTM), ME Research UK, Workwell Foundation ME Association, Hope 4 Fibro & ME and Health Rising websites, where it can be more easily discovered online.
This website is an on going project and will develop over the next year as new content and videos become available.
The main section of the ‘Dialogues for ME/CFS’ project will end with an event hosted by the LSHTM with a video screening, a visiting speaker and a Q& A. This is currently planned for May 2021. However, individual videos covering a variety of subjects will be posted online as soon as they become available.