Welcome to the 25% ME Group Severe ME Day web page. Below are Quick Links for this Page.
Remembrance PRESS RELEASE
How to Help Someone with Severe Myalgic Encephalomyelitis
Web A5 REMEMBRANCE DAY Leaflet
Emily Collingridge story
Linda Crowhurst story
SEVERE ME DAY 2015
To mark Severe M.E. Day 2015 we are focussing on raising awareness of the home care needs of people with severe M.E.
We have taken this decision in view of the truly dreadful service responses that members increasingly report encountering from social services, when it comes to assessing their home care needs and the type of service required.
The items below can be sent to head of social work directors and/or other care managers
Briefing Care Paper
MORE POSTERS (optional)
Please also use the leaflets at top of page to help you when giving information to people etc
SEVERE ME DAY 2014
Severe ME Awareness Day
8th August 2014
Stop the ME Cover up!
Severe ME Day is almost upon us again. This is a relatively new event following it’s launch last year under the banner of Severe ME Understanding and Remembrance Day 2013 which focused on those who had sadly lost their battle to this dreadful disease.
Many people received this day of remembering the severely affected sufferer with open arms and some other ME organisations advertised it by highlighting it within their own publications and websites to help raise awareness.
This year we want to highlight the “ME Cover Up”.
We want to feature this “Cover Up” within our Severe ME Day section of the website, and have asked members, if possible, to send in photos of themselves covered by a sheet and holding up an awareness slogan.
Through this, we want to show that many sufferers feel they are invisible to the outside world and feel that ME is not taken seriously.
We also want to make the point that sufferers really want and need so desperately to be “seen, heard and recognised” and to show that we refuse to be ignored or to be invisible to the world. We may not be able to present ourselves to the world because of severe ill health but we want to be listened to and heard by the appropriate authorities and to receive services, and appropriate help. We would also like to see more biomedical research undertaken, and cognisance taken of the body of biomedical research that exists at present.
We want the medical profession and general public to understand the seriousness of the illness and remember that underneath the sheet there is still a human being.
LETTER TO MP/MSP's
House of Commons, London SW1A 0AA
Parliament Buildings, Ballymiscaw,
Stormont, Belfast BT4 3XX
The Scottish Parliament, Edinburgh, EH99 1SP
National Assembly for Wales, Cardiff Bay, Cardiff, CF99 1NA
Pictures of people covered up to highlight being invisible: LINK
Link to a picture slider
How ME is covered up: Sentences
If you would like to do more to raise awareness of severe M.E., you can download and print any of the leaflets produced for last year’s Severe ME Day to send to those you think would benefit from receiving it - see above
A day to remember everyone who is suffering or who has ever suffered from Severe and Very Severe Myalgic Encephalomyelitis.
Severe ME Understanding & Remembrance Day : This day aims to bring public attention to the illness for the sake of all those presently suffering from Severe Myalgic Encephalomyelitis and to remember all those who have died from ME.
A day to honour the strength of spirit of all those who have endured and continue to endure decades of suffering and profound physical dysfunction and yet receive little, or no recognition or help, but rather continue to experience gross misrepresentation and misinterpretation of their illness and profound disability.
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.
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