Hi everyone, we’re still here! Things are happening, but most of post-production goes on behind the scenes. As such, we’ve been quiet for a little while, but still we move forward, inch by inch.
In some ways, this is much like having #ME. Each milestone is small, but each step is a massive undertaking.
Thom is not the first member in his family to have #ME; the first person who became sick with it was his aunt Sue Firth, who passed away from complications from the condition on 9th May 2008.
With it being #MEawareness month, we’re going to be bringing in some new content, but today feels particularly poignant as it’s now ten years to the day since Sue passed away.
Tonight we remember.
In many ways, Sue was a pioneer. Before the days of Facebook, Twitter and other social media apps that the ME community rely heavily on to communicate with each other today, she was able to contact people with severe ME by email and they began to form the 25% ME Group. This website is run by people who the are most severely affected with ME and it provides a support network and a publicity team to counter the many lies that surround this condition. Sue was interviewed on national TV and radio about ME and was particularly active during the 1990’s and 2000’s, but her condition worsened after 2007.
Fast forward a decade, and many things are still the same. When the only people who are advocating for change in #ME diagnoses and biomedical research have #ME themselves, progress is very slow. And yet, the Millions Missing movement, and the success of the film Unrest show that the tide is finally beginning to turn. All of which began by people with #ME communicating and mobilising as a force, even though many of them are bedbound, either part-time or full-time. And from this community grows both the Unrest film and the Millions Missing Movement, one of the first films to be powered by social media and empowering people who have been forced to hide in plain sight.
As a fitting tribute to Sue, the best thing to do is to give the 25% ME Group some publicity and share their page here. The Black Box Team have been reading their work since 2015, and some of their experiences helped inspire our films.
RIP Auntie Sue. Ten years on, you have not been forgotten.