The missing millions that spend their life hidden with ME

Did you see me on Sunday? Did you? You don’t know what I look like?

Wednesday, 22nd May 2019, 10:55 am
Purple Cats Community Choir

Last Sunday I was the blue in Sheffield’s Big Wheel, I was a pair of shoes on the ground with a story attached to a label, a song on the lips of the Purple Cat’s Community Choir, a ballad on a guitar.

You see normally, you won’t see much of me. Maybe you will see a person with a walking stick attempting to go out, once in a while. But, really you may never see me at all. Why? Well, I and many others spend our life hidden. Curled up in beds all around the world. Unable to function in a way that means we can enjoy the interaction of society. We are the #MillionsMissing. We have ME or Myalgic Encephalomyelitis. It is a devastating illness which robs people of normal lives and leaves them fighting to reclaim functionality. Affecting over 5,000 people in South Yorkshire, of whom 1,300 are house or bedbound, this suffering of so many has been ignored for too long. Together, we are speaking out on a scale we never have before. Last Sunday we had a voice. Sheffield ME and Fibromyalgia Group hosted a visibility action along with over 90 other cities, coordinated by #MEAction. From Tokyo to Mexico City, those with ME, their friends, family, allies took to the streets, with many more demonstrating from home. Three Sheffield MPs attended, as the waters of Barker’s Pool fountains and the Peace Garden cascades were dyed blue, as hundreds turned out on the street - we could be seen. Why do I say we are invisible? The simple truth is that we just don’t have funding for biomedical research. Less than £1 per person per year is spent on ME research in the UK, despite research showing the average quality of life for us is lower than for those living with heart disease, breast cancer or stroke. Treatments currently offered are not working for the majority, many people report feeling worse. Lack of awareness leads to one in five families of children with ME having child protection referrals made, half as they are suspected of fabricating the illness. But this couldn’t be further from the truth. ME is the leading cause of long-term school sickness absence, seen in children as young as five. 

Without people singing and giving speeches, sending in shoes labelled with stories, giving me and others a voice, you would never know we even exist.  Find out more about Sheffield ME and Fibromyalgia Group’s at www.sheffieldmegroup.co.uk Find out about the #MillionsMissing campaign at www.millionsmissing.org