People with Severe ME are far too hidden away
..at last a day on which we can make our physical reality, our physical neglect and our needs known .
Remember us, remember them. Let that be our motto for the day. We are severely ill and we are here .
ME is a World Health Organisation classified Neurological Disease, with serious multi-system dysfunction. People who suffer from it severely are house and bed-bound. They experience paralysis, pain, muscle dysfunction, dysautonomia, acute noise and light sensitivity, gastric issues; profoundly affected by the environment, they need to live lifes of almost total isolation in order to cope.
The rainbow has been chosen as the emblem for this day in order to symbolise a bridge from ignorance to knowledge. The many colours of the rainbow represent the fact that ME does not discriminate and also it is an illness of many layers. The rainbow bridge also helps us to remember those who have lost their lives to this disease and to honour their memory.
We need this special day
This is a new day especially for the ones most neglected and unseen.
A day for to speak out and raise funds..
..for those of us who are shut away from ordinary living, in darkened rooms, too noise sensitive to have direct contact with others, too ill to sit up or move, paralysed, shaking with massive physical spasms, in agony on every level, experiencing burning, throbbing, screaming, tortuous levels of pain, unable to eat, unable to swallow, unable to fundamentally live in the normal ways of the world.
A day for focus
We are launchig an 'official' day solely connected to Severe ME, on Sophia Mirza's birthday : 8th August. Sophia who had true severe Myalgic Encephalomyelitis, was treated outrageously by the medical profession and by others in healthcare. What happened to Sophia should never be forgotten and so it would mean a great deal to use her birth date to honour her memory and to help others.