(written after attending the Millions Missing Demonstration in London, UK on 12th May 2018)
By Thom Jackson-Wood
This isn’t a clear-out sale at a shoe shop It’s a protest – of absence.
The absence of living that is a side-effect of having #ME…
A way for people with #ME to feel present when they are not able to be there.
And to people who do not know this illness, how many lives it has taken.
It’s a protest to #ReleaseTheFunds – funds badly needed to help find a cure, or even a treatment…
A cure to an illness which has left #MillionsMissing
An illness which has been compared to late-stage AIDS in surveys which determine quality of life (or lack thereof)…
An illness which understanding about has made no progress since the 1980’s and for most of the 2010’s felt like it was going back due to the PACE Trial.
It’s rare to find an illness where people are protesting to get the majority of medical science to stare at it directly in the face and call it by its name – Myalgic Encephalomyelitis or #ME But such is the world that we live in.
And this why we’re making a film about it. “The Black Box: Listen”
A film about an illness that refuses to be taken seriously by most of medical science, but also refuses to go away.
An illness where many of the people protesting are too ill to attend in person. So they’re protesting by proxy.
Protesting so that you can understand what it’s like to live life in their shoes.