Well, it’s been a quite challenging final year for the “Dialogues for a neglected illness”
project. As a carer during a pandemic, I’ve needed to remain rather isolated, unable to do interviews in person and, until the last few months, having to do much of the editing alone. At last Josh had a break from a surge in his other work, so we were able to work together on the videos again and he could tackle the skilled editing and graphics.
The next task in the new year is to write an evaluation of the “Dialogues”
project for Wellcome and try to give them some idea of the reach it has had. The project has been either hosted on or linked to at least 14 websites – MEResearch UK and MEAssociation have the project videos on their websites, as does Workwell. The “Severe and very severe ME/CFS’
” video is included in the “Healthcare Special Issue- Severe ME”
as the “Summary video
”. Videos are linked to in “Study PRN – continuing professional development courses for UK healthcare providers resources.
” Doctors for ME incudes the project, Action for ME includes links and embeds one video, and The US Clinician Coalition website includes links to videos on PEM and Severe ME/CFS . Many other websites – including Physios for ME and Long Covid physio, and websites in Australia, New Zealand and US list the videos in their resources.
Finally I would like to thank so many people who helped in varied ways, giving their time to be interviewed or to record their own material, to offer suggestions, encouragement and feedback, and to all the patients who shared their experiences or sent me their photos to share. Without their help the project just wouldn’t have been possible. Sadly I can no longer personally thank Graham McPhee
, who died in October, but to everyone else and to his family – Thank you.