Back in 2012, after seeing The World of One Room on YouTube and Facebook, Jen Brea approached me to see if I’d like to feature in a film documentary, (at the time called Canary in a Coal mine) about M.E. I agreed and what a journey it has been! It was renamed Unrest to give it a global understanding because it’s a small indie film with huge ambitions.
From the very beginning Jen and her mighty crew had a powerful vision for the film. We had hours of footage taken and I got to know the British producer of Unrest, Lindsey Dryden, alongside other parts of the team, Sam Hessen, Nikky French and Kat Mansoor very well. They became friends. They were understanding and patient. It was following me at a pivotal time in my health journey, where I began to sit on the edge of the bed and even stand for the first time! 
After much work and a huge amount of energy taken, we did interviews step by step through Skype because the M.E and the fact we lived across the pond from one another meant it had to be this way. We both found ways to still keep going despite our disability it became a part of life. Once the footage was done, it went to the land of editing.
Four long years passed since I first started the project and my life had changed quite considerably for the better with loads of twists and turns, just like anyone with ME. Out of a chrysalis, grew the very mighty film that had a strong message to give. 
The film had been chosen to be played at the Sundance Festival. This is major for any film, let alone a relatively small indie film by a first time female disabled director – a bit of a mouthful! However, it was a great honour to be part of this important film.
We got a phone call to say it had been selected and were given a viewing so we could all know on the premiere of Sundance what was in the film. It was very emotional to watch but I really enjoyed how human it was. It showed grief, it showed suffering but ultimately it was all about love too. Listening to the song by Ren Gill ‘Patience’ was so powerful lyrically that they could not have chosen a better song to go with the film. My own part in the film was just small, but played its part alongside Leeray and her daughter Casey on what it is like to be a mum with M.E…the heart wrenching story of Karina’s parents who were having to live without their daughter because she had been forcibly removed from her home because M.E was not believed to be real in Denmark then there was Whitney, who lived in a darkened room with Total Parental Nutrition going straight into his heart to feed him. All of our little stories had a big part in the overall storytelling of Jen coming to terms with her disease. 
Fast forward in real time and Unrest started winning lots of film festival awards – the first being Sundance Best Edited Documentary Film and they just kept coming at all of the different documentary festivals across the world. This gave great exposure for M.E in loads of different countries that had previously thought it was all in the mind. In the UK Unrest made it’s festival premiere at the Sheffield DocFest. Considering what a political hotspot the subject of M.E is, incredibly it won more awards at the festival! This meant we could all try to use the film to grab more attention and ultimately make changes to the millions missing in society – both funding missing for research and those missing people housebound and bedridden. My husband went up to the film festival in Sheffield to represent me. 
I knew that Unrest’s UK theatrical premiere would be in October so I did a lot of resting in order for me to be well enough to go and join the team. Once I got there I made sure I had industrial strength ear plugs and Dark Glasses if necessary. I’ve not been in a full screen cinema since I became unwell so it was quite an event! The Picturehouse central is quite a quirky place, where loads of indie films get shown. It really was a hubbub of activity. The film went down really well and it was amazing to see so many people. I joined the Q&A from the back because unfortunately it wasn’t a fully accessible cinema, even though it claimed it was! Afterwards, Jen and I met the people who had come. It is fascinating how much is happening in creativity about M.E. There are ballets, plays and amore documentaries all in the works – it’s incredible. 
After the premiere, I had a few rest days before another key event arranged by Shella Films and the ME Association. The first thirty minutes of Unrest being screened in parliament for MPs to attend to and other guests from other charities and research labs and doctors. Vince Cable was there, as was the education MP. Never before have I been referred to as ‘honourable guest’ but I felt incredibly privileged to be there.
It is now time for us all to work together, no matter what walk of life you come from, it’s essential. Would you believe that research has shown that approximately £3.3 billion is spent in the UK alone on the needs of those patients with M.E? It’s ludicrous. The even more awful fact is that figure only accounts for patients who receive care, what about those who don’t? It’s scary. If they found a treatment or a cure think how much money could be saved on the economy. I was part of the Q&A at the end of talks and heart wrenchingly, a mother asked me how she could help her 
daughter who had lost her childhood to M.E. All I could offer hope but seriously what can you say? What could I I met a paediatrician who specialised in M.E, Dr Nigel Speight and all he could do was apologise for everything I had gone through. This is why I’m so passionate about everyone working together. Yes, we need biomedical research but we need care for those suffering now. The only charity that is doing this at the moment is The M.E Trust. Why is it only a charity providing proper support for M.E patients? By the way, they do a phenomenal job.
I really struggled with the noise and the occasion so came back and was a bit of a state. Thank you Shella Films and The M.E Association for all you’ve done. Unrest – you’ve amazed me with your tenacity and grace. Let the movement begin!
Links to sites:
Thankyou for all that you do! I too think often of you. tina who lives in Germany
Thank you for writing this! I think of you often.
Janet (Whitney’s mom)