Running on the idea that visual representations of life with M.E. can – as accurately as possible – portray the depth, the range, the severity and the unpredictability of the condition, I am pleased to say that I am currently embarking on Change For M.E. Change For Us’ next visual project.
Starting on 8th February, I have been recording brief segments of myself each day for three weeks. The video diary project, entitled The Unpredictability Factor, is intended to represent how the effects of M.E. can vary drastically on a day to day basis. In the entries, I’ll be discussing how the condition affects my life, how a relapse changed everything and how the management of symptoms differs and can be disturbed through different means.
I aim to film a short segment each day from the 8th to 29th, with their upload to sometimes be staggered by a day or two, dependent on the obvious. This is an intensely personal project. Unlike “The Last Great Medical Cover Up”, I am documenting my own life, my own, custom made disease, and while that’s an intensely humbling thought, I hope it will shed some light on middling ground of chronic and “invisible” illness.
Anyone will be able to view the segments through the website and the campaign’s YouTube channel, as well as links that will be provided on Facebook and Twitter.
I hope, that in viewing this every day, highly personal experience of M.E., people will be encouraged to donate to the campaign’s next project, creating a trailer for The Last Great Medical Cover Up and advertising it on prime time television.
As always, please get in touch via the Contact page on the website, fill in the form with your suggestion, idea or query, and I’ll do my best to respond as quickly as possible. Alternatively, you can reach out via Change For M.E. Change For Us’ social media.
Latest News
Submit Long COVID Drug Recommendations to RECOVER-TLC!
October 7, 2024
No Comments
Last month, RECOVER TLC met at NIH headquarters in Bethesda. The goal was to initiate a drug development strategy for Long COVID clinical trials. Now, RECOVER TLC has opened the RECOVER-TLC Intervention Information Request Form, where you can make suggestions about which drugs and other interventions to trial! Anyone can submit a therapeutic for consideration
The RECOVER-Treating Long COVID (RECOVER TLC) The Path Forward
September 26, 2024
No Comments
The RECOVER-Treating Long COVID (RECOVER TLC) Kick-off Meeting was Sept 23-25 in person and over Zoom. I had the privilege of attending over Zoom and Jaime Seltzer, #MEAction’s Scientific Director, represented the needs of the ME community in person and as an invited member of a panel on clinical trial design. There were many speakers