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.
UNDERSTANDING & REMEMBERANCE DAY
SEVERE MYALGIC ENCEPHALOMYELITIS
When we were contacted by Diane Fletcher – mother of very severely affected member, O – regarding the idea for the above, I was extremely pleased. I immediately put forward this proposal to the Management Committee, who readily agreed.
The 8th of August will now be marked as an Understanding and Remembrance Day for the Severely Affected.
We will continue to take part in the general ME Awareness Week which is held May. We simply feel that it is important and necessary to highlight and raise awareness of the most severely affected ME patients – to understand their plight and remember those who have lost their fight to this illness.
Along with your newsletter, you will find enclosures relative to this new Understanding & Remembrance Day for Severe Myalgic Encephalomyelitis. There is a Press Release, and a fold over Leaflet. We hope that you will be able to use these to help ensure maximum impact for this initiative. Further copies are available from our website, or from the office. The new leaflet complements our existing A5 leaflet ‘A Patient’s Perspective: Information Leaflet for Professionals Caring for People with Severe M.E.’ copies of which are still available.
Other information produced for this day, including members’ stories, and an Understanding and Remembrance Information Document, can be found on the 25% ME Group website. Follow the link from the home page at: www.25megroup.org
A Brief Word From Sophia Mirza’s Mum, Críona Wilson, About Remembrance Day
I’d like to thank the 25% M.E. Group for the wonderful support they give to all those suffering from severe M.E. as well as their families and friends. When Sophia was ill and suffering beyond human endurance, they were always there for me; without them I’d have been totally lost. They gave me practical and financial help in obtaining a copy of Sophia’s Inquest transcript. Within these it can be clearly seen that M.E. is a physical neurological disease as said by The World Health Organisation and not the imagined illness purported by the psychiatrists.
I have never seen a disease that so ravages a person of all that they are, leaving them to be officially abused by those who are supposed to protect and care for them – the medical profession. In my opinion, they are guilty of criminal abuse. Sadly, the psychiatric body is so powerful that the majority of people believe them…. until it strikes their own family.
Hopefully Remembrance Day will allow us all to focus on those who are so severely ill that they can have little or no contact with anyone. They are unable to bear any form of light or sound. The human voice hurts them, the human touch hurts them. Sophia could not have her hair washed for the last five years of her life as the touch of water made her violently ill. All the everyday things that we take for granted are no longer available to these severe sufferers of M.E. They exist in an abyss of pain and abuse.
People say that nothing can be done, but I believe that it can. By all of us doing our little bit to support and fight on behalf of those suffering from severe M.E., a lot can and will be achieved.