AUGUST 8 - SEVERE M.E. DAY
Severe ME Day takes place every year on August 8th. It is considered a day for remembrance of those who suffer from and have died from severe myalgic encephalomyelitis (ME), as well as a chance to educate the public about severe ME and advocate for better treatment and research.
This day was originally founded by the 25% ME Group in the UK, and has since been honoured by organizations and individuals across the globe.
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.
Those with severe Myalgic Encephalomyelitis are either bedbound and/or virtually or completely housebound. They require unique care due to the tendency for the illness to be exacerbated by everyday stimuli such as light, noise and movement. They are often too ill to use a wheelchair, or can only do so to a very limited degree. Many need to spend their time lying flat in silence and darkness to avoid deterioration. Some are tube-fed, incontinent, unable to communicate, allergic to medications, and unable to move.
Those with very severe Myalgic Encephalomyelitis experience profound levels of suffering and extreme symptoms, which can be life-threatening. Life may be reduced to basic survival, struggling moment by moment to breathe, eat, and drink, while enduring extreme pain.
In the very severely affected, exacerbations can be triggered by such trivial things as conversation, teeth cleaning, being moved to prevent pressure sores, sitting up in bed for a few minutes, the noise of a plane, or the brightness of the sun shining through curtains.
People whose Myalgic Encephalomyelitis is less extreme, can manage some activities, but are likely to need complete rest before and after activities, and to avoid overexertion, in order to maintain stability in their health.
The severity of this illness often makes it impossible for people to have contact with loved ones, doctors, or the outside world. This is a group of people who are generally invisible. In helping to make visible the stories of people living with severe M.E., and of those who have died as a result of the illness, you can help end years of misrepresentation about M.E. and increase understanding. The seriousness of the disease is often underestimated. This causes much suffering to those with M.E., who have a double battle - with the disease itself, and to get their illness taken seriously.