The new website for Dialogues for a Neglected Illness (Dialogues for ME/CFS), is now live. It is a work in progress and both website and videos will be changed, as videos are completed and links to resource materials are added and updated.
Please bear with us while we collect the videos together in one place and build the project on the website www.Dialogues-mecfs.co.uk over the next 12-18 months.
The Introduction to ME/CFS video is available and videos on Understanding GET and Understanding PEM will go up today or in the next day or two. Severe ME videos will follow shortly. Then we hope to make videos with more of the patients’ contributions to the project available soon, followed by videos addressing diagnosis and management. There will be more interviews, COVID-19 permitting, and another longer video examining the wider context for ME/CFS. So there is still plenty to do!
The project has multiple purposes, one of which is for patients to use the videos to help less informed GPs recognise the disease better and get a better grasp of some aspects of the disease and its management. I hope this project takes a realistic approach to helping to educate professionals who have little understanding of the difficulties many patients face. The project was initiated because I realised that our previous video, Voices from the Shadows, was not the best tool for educating GPs. I hope many people will find the project of use in one way or another.
We have endeavoured to represent interviewees views as faithfully as possible. All are asked to review their contributions to the videos to ensure they feel they accurately represented, since the editing process often entails shortening what someone has said.
The project is supported by a three year award from the Wellcome Public Engagement Fund 2018. Until the ‘about’ section is completed further info is here. http://voicesfromtheshadowsfilm.co.uk/dialogues-project/