Severe M.E. (Myalgic Encephalopathy) Awareness Week 2025, advocating for those who are rarely advocated for
Severe ME Awareness week which aims to highlight the experiences of those who suffer. Our radio show was a response to those who couldn't access a screen.
This week (4th August - 10th August) is Severe Myalgic Encephalopathy Awareness week which aims to highlight the experiences of those who suffer from Severe ME.
As an alternative anarchist performance space who looks to support artists who are on the margins, we are always searching for ways to include as many people as possible. It meant thinking about our audience members who might be sensitive to light and sound therefore they don't always find Zoom easy to access. Our performers might have unpredictable days, resulting in missing deadlines or being unresponsive to our emails.
It could even mean thinking about our comrades who are experiencing harm from having to fill out unnecessarily long PIP/Universal Credit forms, having to deal with social workers who don't have your best interests at heart or having to fight a medical system who actively refuse to understand ME, resulting in individuals in hospital for extended periods of time.
In 2024, I personally suffer a medical emergency during our Pride event and rather than "pushing through", I decided to take an extended break to re-evaluate how I conduct performances. I don't like feeling rushed which I found it was happening before each performance. Plus, I shouldn't have a massive symptoms flare straight after.
As I was searching for ways to change our approach, I found a project called "Prison Radio", where they interview inmates in the US about their experiences, what they've learnt and what they hope for the world. I realised that I could borrow this format and apply it to our own organisation. Plus, I thought it was quite a unique idea to execute.
Well what are the benefits of hosting a radio show?
- Make our performances available for those who can't always make specific dates, meaning they can access the show whenever they can, at whatever pace.
- Make our performances accessible for those who struggle with screens for a long time.
- During our radio show, we can continue to advocate for those who are forced to advocate for themselves.
We hope that our radio show is a project that we can continue and our community can enjoy.
You can join our Discord community to learn more about the production of our radio show or suggest any ideas to us.
And lastly, we'd like to dedicate this project to everyone who we've lost to Severe ME or those who are currently suffering in inadequate medical institutions. We cherish you.
