The Unpredictability Factor

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.

Facebook
Twitter
WhatsApp
Email

Latest News

Facets of ME: Temperature Dysregulation

Welcome to June’s #FacetsOfME! Facets of ME is an educational feature where we dive into a particular aspect (or facet) of ME and explore it more in depth. This month we are focusing on temperature dysregulation- heat and cold intolerance. It is surprising how difficult this symptom can be to manage until you experience it.

Read More »

Dept. of Labor Updates Information on ME/CFS for Workers, Employers

The U.S. Department of Labor’s Office of Disability Employment Policy (ODEP) has updated the information on ME/CFS provided at its Job Accommodation Network website to align with the most current CDC guidance. This action will help workers and employers find accurate information on ME/CFS and combat stigma and improve workplace outcomes. At #MEAction’s recent meeting

Read More »

#MillionsMissing: 7 Days in Self Portraits with ME/CFS

After taking #MEAction’s photography workshop with photographer Lucia Doynel for #MillionsMissing, Terra Dumont produced these stunning photos as a glimpse into her life as someone living with ME/CFS. Terra spread this experience over 7 days, focusing on a different theme each day. See her wonderful work and accompanying commentary below. Click on any of the

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top