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.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the