The hashtag #millionsmissing has been popping up all over social media recently, but what does it mean, I hear you ask?
#millionsmissing is a day of global protest on the 25th May 2016 to raise awareness of ME/CFS and the impact it has on patients and their family. It's about the #millionsmissing from their schools, universities and careers because of this illness. The #millionsmissing from research and development of effective treatments and cures. The #millionsmissing from their families, friends and social lives. The #millionsmissing from the lives they want to lead.
Did you know that in the USA male pattern baldness receives six times the funding that ME research does? And that the amount of money that goes into MS research each year equals 23 years of ME funding? There are many exciting developments happening in ME research but we need more money and time given to developing a cure. Almost all of the money on ME research is raised by patients themselves. This just isn't right.
#millionsmissing has the potential to be the biggest global protest day that the ME/CFS community has seen for some time, if not ever. But we need your help to make it happen- and we need your shoes!
Shoes are being sent to the global protest sites in order to represent the people who are missing from their lives (and the patients who are too ill to attend the protest in person). All you need to do is post a pair of old shoes (or order some on Amazon or EBay and have them delivered straight to the protest address). It won't cost you more than a fiver. And you don't need to have ME- shoes are being welcomed from carers, family or supporters wishing to help the cause. The more shoes we send, the bigger the impact will be. (And all the shoes are being donated to charity afterwards).
I'm sending my old running shoes and the medal I received from running a 10K (with relative ease) in 2009. I have to be honest, running was never a massive part of my life and I don't miss it as much as I miss other things (like walking!) but I do miss that feeling of really having challenged yourself and feeling tired in a rewarding way, with the endorphins rushing around in your body and the fresh air on your face. I don't need to keep the medal. I know I did it. And maybe it will give my submission more impact.
Only a minority of patients with ME are well enough to protest. Our voices are rarely heard by medical groups, government agencies and the wider public. Social media has helped spread the word, but it's still not enough. In sending a pair of shoes, not only are patients able to participate, but the 'empty' shoes represent something larger and more tragic.
If you can't send shoes in time, you can still take part by taking a photo of your shoes on your doorstep or at the end of your driveway, and post it on social media using the hashtag #millionsmissing.
Please. We need you- do it for us.
- The website: #millionsmissing virtual protest
- Address to send shoes to in the UK (Post by 21st May) : LA Cooper, 25 Grassmead,Thatcham, Berkshire, RG19 4FP (and if you are a patient, fill in this form: patient form)