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

Remembering my virtual community of people with ME

*To learn more about ME please visit:

Action for ME

ME Association

Phoenix Rising





7 thoughts on “Why I’m protesting for #MillionsMissing

  1. If I was in the UK I’d be protesting alongside you, it fills me with pride that fellow ME sufferers are standing up against the wrongs that we so often have to suffer!

    1. I’m really excited to have this opportunity to protest. The feelings have been suppressed for too long for too many. It’s great to be able to support one another in a public way. Many thanks, your Spoonie Sister! 🙂

    1. It was both emotional and exciting to be able to do so knowing so many others would also love to be there in person. Thank you for re-blogging it. Lets hope future generations won’t have to suffer for as long as you have. All the best. x

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