#MillionsMissing protest in words and Pictures

I will always remember 26 May 2016. It was the day when, as a collective community, we made the invisible, visible across the world.

I’ve already written about why I felt so compelled to protest (click here) I was relishing the opportunity to protest for myself, my virtual friends, and the global ME community. Only a severe relapse would prevent me from going.

The journey to London was humbling. I was struck by the irony of being cheered on by countless numbers of people from around the world with ME wishing me well in the protest! All of them, without exception, wished they could be there in person and the privilege of being well enough to take a simple journey to London was overwhelming.

Seeing the shoes being laid outside the Department of Health really took my breathe away. I knew the personal back stories of some of the people represented by the empty shoes, and could only wonder at the others. What has been the cost of people’s loss in their social lives, families, careers, hobbies, passions and dreams? How can so many go silently ‘missing in action’? Who is going to take notice and care enough to help?

Sadness, loss, compassion, frustration, anger, hopelessness and desperation were all swirling around as I read the accompanying labels to each pair of shoes.

A man came to ask what we were protesting for and was genuinely surprised when I said ME. “Oh, I thought that had disappeared years ago!” he replied. It summed up the whole reason for being there. We live with an invisible illness yet some how have become invisible ourselves!

We came from different backgrounds, professions and were in different stages of life and health to sit and protest but we all shared stories that were instantly recognisable: we had all been let down by health care that has been missing for us and in many cases has caused further harm.

May 26th was the day we made the invisible, visible! Dozens of photographers lined up to take our photos and the events were filmed for Canary in a Coal mine. Department of Health staff came out of their offices and took note, members of the public seemed genuinely curious and empathetic, Members of Parliament even came and offered support. Social media was buzzing with excitement and we were trending on Twitter and Facebook.

I tried to post as much of the day as I could on twitter but in so doing missed a lot of the other #MissingMillions events that were happening worldwide but do follow the hashtag or ME Action for further coverage.

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As I headed home to St Pancras station a guy was playing “I will survive” by Gloria Gaynor on one of the public pianos and I was soaring high! I boarded the train and read a snippet of news about our protest in the London Evening Standard and reflected on what a significant day it had been.

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Self professed ‘Unwise Guy’!

Outside of our own ME bubble however, there is still a long way to go to be visible. For all the photographers that came, I’ve yet to see anything in any other newspaper about our protest. (Maybe we should start a #MillionsMissing-Missing campaign!?!) The Evening Standard’s first comment was from a self proclaimed ‘Unwise Guy’ who typically demonstrated why we need this illness properly researched, funded and understood.

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Listen to LA Cooper’s opening speech here

However, May 26th was a fantastic platform to start from and I am more optimistic than ever that hope is within our life time. Huge thanks must go to ME Action and Change for ME and the dedicated small teams that made this happen. The excitement I’ve experienced seems to be shared by those that were part of the virtual protesters from their homes. I do hope we can put some of our past hurts behind us and build on what we’ve collectively achieved this week. I live in hope that one of these days it will be the stigma and disease that disappears and not us!

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I’m sharing one of the stories of those that couldn’t attend the #MillionsMissing in person. Tanya Marlow was the first person I met (virtually) with ME. It turned out we had both shared mutual interests and friends in our real lives. It’s thanks to Tanya that I was brave enough to leave the shame of the illness behind me and she is a constant source of inspiration. She is also a fantastic communicator and writer. Please read her #MillionsMissing story here: ‘Why I’m giving up my tainers’

 

 

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Why I’m protesting for #MillionsMissing

What is the protest for?

May 25th, 2016 will mark a global day of action for ME (Myalgic Encaphalomyelitis)* There are literally millions of people worldwide who want to stand up and be counted in asking for proper understanding and recognition for their condition, funding for research, and better training for medical practitioners. In the UK, protesters will be convening outside the Department for Health, Whitehall for a two hour silent protest. (Click here for details) Similar protests will also be happening worldwide. See below:

Millions Missing mapFor many people with ME, this is far too big an ask. Many have been housebound for years, even decades, so there will also be a worldwide virtual protest so that everyone has the opportunity of being included. This will primarily involve people sending in their shoes to stand in their place or including pictures of their own.

My personal protest

I have been waiting nearly twenty years for an opportunity to stand up and be counted alongside other people with ME. That’s when I first went missing. The trigger that floored me was a virus. It was nasty but nothing that warned me of what was to follow for the years to come. Doctors made their diagnosis in the absence of research and evidence. I was told it was stress or Chronic Fatigue Syndrome and then finally concluded I was just looking for a way out of work! I tried to re-energise myself with healthy food, fresh air and extra trips to gym but my symptoms went from bad to worse and my career, busy social life and my much loved ability to exercise all went missing.

I hated admitting that I had ME and I rarely did. (ME is still sometimes unhelpfully referred to as Chronic Fatigue Syndrome) It was just so misunderstood. Fortunately my health gradually improved over the years and I made a good 95% recovery with a return to work, volunteering, socialising and fitness. I had conquered ME and the whole painful episode was behind me. So I thought…!

My protest on behalf of others

Two things changed in September 2013 which was a tipping point for me:

1.I had a full blown relapse that rendered me housebound again.

2.Social media. I reluctantly started to connect with other people with ME. I was quickly amazed how many people were out there with similar stories to my own and far worse. I was shocked how widespread and commonplace mistreatment was. There were also countless stories of livelihoods, partners, homes, careers, aspirations and friendships destroyed by this condition that has been unfairly trivialised for so long. People had been stuck in their illness for longer than my first diagnosis, yet there was still little change a decade on. I also discovered the horror of ‘Severe ME’ and how much worse this illness can become.File 18-05-2016, 21 58 21

Research is woefully lacking in funding and consequently, patients are still being blamed for their own illness.

Biomedical research is on our side but there is still a vocal minority that believe ME is a psychological condition creating dangerous consequences and great harm from their ‘treatment’.

Nothing gets my goat more than injustice and I was discovering a group of people that had been hurt, mistreated, marginalised and forgotten for decades, on a scandalous scale.My only shame now is turning my back on a group of people who are desperate for people to believe them, invest in research and can give them hope for the future.

So, I’m relishing the opportunity to stand up as one in a million on the 25th May. Not just a million, but an estimated 17 million people worldwide who have quietly gone missing from society. 25% of these are estimated to have ‘Severe’ ME. Together, we will be making the invisible, visible and we would love to have your support. Please visit ME Action.net

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Remembering my virtual community of people with ME

*To learn more about ME please visit:

Action for ME

ME Association

Phoenix Rising