This year, Rebecca and I wanted to get more involved in the wider campaign to have ME recognised as a legitimate health condition and release funds for biomedical research, and we went to the London protest of #MillionsMissing on Saturday 12th May. We did this because we felt it would be wrong to make a film about ME but ignore the wider community. And more importantly, we recognised that not everyone who has ME is able to protest in person, due to the severe fatigue that it causes. In my case, my ME causes severe chronic nerve pain but my fatigue level is quite mild – as long as I use my wheelchair, I won’t be that badly affected. As a result, I feel strongly that I should use my voice and body to speak up for those with this condition who are unable to speak for themselves.
Rebecca and I were also be fortunate to be joined by Caroline Day, a woman with ME who came to our quiz night in Hoddesdon in March and shares our passion to make the condition better known.
And this year, it really did feel like the MillionsMissing movement was beginning to gain attention outside of the ME world. From its beginning, Millions Missing has been an international movement, as people are affected with ME all over the world, but now it can attract news coverage from various countries. The BBC did some great coverage this year, including a full-blown Newsbeat documentary on the condition, as well a number of supporting articles. As such, it felt appropriate that the London protest for Millions Missing this year took place at All Souls Langham Place, a church right outside BBC’s Broadcasting House.
Various landmarks across the UK were lit up in blue for ME Awareness, including the Berwick Royal Border Bridge, the city walls of York and the Tyne Bridge in Newcastle. The Tyne Bridge campaign was organised by veteran ME fighter and campaigner Anita Roddam, who unfortunately was not able to see the fruits of her hard work in person. This is because her ME is so severe it has left her bedbound since 1987 when she was forced to give up her teaching career, Now, she teaches people about ME awareness through her social media accounts.
I mention Anita as an example, as while her condition is severe, it is far from unique. I’ve had the pleasure of getting to know her over this month, as she was a close friend of my aunt Sue Firth, who passed away ten years ago this month from complications of severe ME. As I became more aware of the political struggle going on with ME research, I felt it would be best to represent my aunt at a Millions Missing Protest.
On the day of May 12th it was raining, but that wasn’t going to stop Caroline and myself. Having a lack of energy means you get very skilled at focusing the energy you do have on the things that matter. And this mattered to us. That being said, it was still very moving and surreal to see the steps of All Souls Langham Place filled with the shoes of people with ME who, like Anita, were unable to attend in person. It inspired me to write a poem, which I’ll put in a separate post.
Throughout the demonstrations, there were cries of “What Do We Want? – Biomedical Research,” and “When Do We Want It? – Years Ago,” as well as a heartfelt rendition of Bob Dylan’s “Blowin’ In The Wind,” but with lyrics changed to describe the pain of people living with ME, the biomedical research that is so badly needed and how the PACE Trial has made things worse.
There is a Vlog on YouTube that was put together by the freelance journalist Sophie Eggleton who attended the protest and she also has ME. Her coverage gives you a good idea of what happened, and it includes the song, You can find it here:
There was also a reading of a poem done by Jessica Taylor-Bearman, who appeared in the groundbreaking documentary film “Unrest” (2017), and was well enough to attend in person, This was followed by a set of moving testimonies, from people with ME and their carers. Perhaps one of the most moving moments was when a teenage girl was about to speak, but she ran out of energy just yards before being able to speak into the microphone, and she was forced to stop and sit down on a rug nearby. In the ME community, this is known as ‘crashing’ – I have experienced this myself a number of times, but to see it happen to someone else in such a visual way only served as a stark reminder how ME can ruin any plans you have – even at the very last minute. In the end, her mum had to read out her piece instead.
Caroline and myself also spoke near the end, but rather than speak about our own experiences, we spoke about people we knew who had ME. Caroline read out a piece from her friend Erszebet (or “Sherbet”) which described how ME had stolen a great part of her life, while I spoke about my aunt. What was interesting about my testimony was that I had grown up knowing a family member with severe ME, but then also experienced it myself in a somewhat milder form. I think closed my testimony by quoting part of Peter Gabriel’s “The Wallflower” – which is the most effective way of describing living with ME in pop music that I’ve heard – it’s well worth a listen.
Although they didn’t catch the opening of it, my testimony was filmed on camera by a lady called Bettie Hough. I hadn’t known she had done it until I saw it circulating around Facebook. I was keen to get a copy of it, not for myself but for my aunt’s family. You can see it on Facebook here:
After the protest disbanded, we made our separate ways home – but I found myself still processing it days later. I’ve been to a couple of demonstrations before, but this was the first ME awareness one, and it remains the one I remember most vividly.
I think it’s because of the shoes, representing people who couldn’t be there in person. At first you might think it’s because they’re lazy or can’t be bothered. But once you begin to understand why they are unable to be there, the reality begins to sink in.
And then it hits you how big this problem is.
A gaping, hole the size of millions of people,
Each person was stolen by ME, leaving a pair of shoes.
As such, there are Millions Missing, all over the world, because of it.
These are the shoes no-one wants to stand in. But millions do.
Help us change that for the future:
Millions Missing Website: