Disclaimer: Please note that everyone taking part in this event is responsible for their own safety and wellbeing; the organisers do not take responsibility. The police have been informed and since this is public land they have assured us we have the right to demonstrate here, they will support us and that there is no risk of arrest – unless someone does anything that is likely to endanger the health & safety of others.
While collapsed, we need to show that this is not enjoyable: the person with ME has to do this in order to survive/exist. We suggest you bring a black sheet/cloth/bin bag to cover your body to signify a living death. Please bring props such as eyemasks, sunglasses, ear defenders, possibly feeding tubes etc to convey:
The exhaustion to the point of collapse after minimal activity; the nerve, joint and muscle pain unresponsive to painkillers; the physical weakness; the cognitive dysfunction with thinking & memory problems; the inability to tolerate light and noise; the faintness & dizziness particularly when standing; nausea; rest or sleep bringing little or no relief; plus many other symptoms. This is what our loved ones have to suffer, day after day, after month, after year, with no end in sight. A living death.
Since Old Palace Yard is cobbled, you may also wish to bring something to lie on, but please make it as ‘dead-looking’ as possible i.e. no bright colours.
Please bring banners if you wish but think about who may hold them while you are lying on the ground. We plan to have those with banners at the back, with those collapsed on the ground in front of them. We plan to film & photograph the event from an angle that gives maximum impact to the sight of those collapsed on the ground, with the Houses of Parliament in the background.
Ideas for straplines: M.E – a living death, it could be YOU or your child. Biomedical Research urgent.
You may want to wear a sash or sign saying, for example: My son, M.E 6 years; my wife M.E 20 years; my Dad M.E …; my sister….and so on.
Our aims are: to raise awareness among the public and government about how severe & long-lasting M.E can be; how common it is; how it can strike healthy, happy individuals out of the blue, particularly our children and young people; and that we urgently need far more investment in biomedical research to discover cause(s), effective treatments and hopefully a cure – before it’s too late.We also need far better training for doctors etc. on the latest knowledge about M.E.
With this demonstration, as well as depicting the severity of the illness, we will be honouring those who have actually died from M.E. and also the courage of all those who continue to fight on in the hope of a living life.