Emily Rose: an appreciation by Cathy Stillman-Lowe

Emily Collingridge's passing is a terrible loss - the light that shone so brightly has finally been dimmed after many years of deeply painful struggle. Her extraordinary spirit will however never be forgotten by those whose lives she touched, and her book ‘Severe ME/CFS: A Guide to Living’ constitutes a permanent and invaluable legacy for those suffering from severe and very severe M.E., as well as those caring professionally or personally for such people.

I was able to work with Emily on several publishing projects; her formidable intellect, her facility with words, a relentless drive and determination to see a project through, and a consistently meticulous attention to detail led to the highest quality output.  Her book remains an outstanding achievement, and testament to her determination to help others and turn her suffering into a force for good.

As a friend, she was tremendously thoughtful, generous, honest and loving.  I first met her through a feature that I was writing for a magazine, to which she contributed a typically eloquently expressed case study. I didn't realise that it was humanly possible for someone to suffer so much, particularly towards the end of her sadly short life, and for there to be no 'cure'.  To stay constantly alongside someone when you can't 'fix' things or make them better is a particularly tough challenge. However, through it all, Emily was very clear that there was no ‘hierarchy of suffering’ in which her pain was more important than the health problems that I was encountering myself.

I never knew anyone suffer in body and soul as Emily did, and her struggle to access M.E.-appropriate healthcare was distressing to witness. So often the severely affected are in fact severely neglected by the NHS; thus the inverse care law applies in that those most in need of care are the least likely to receive it.

Very severe M.E. is a terrible place for anyone to live, but Emily did so with huge courage and for a very long time. To know that Emily is no longer suffering may be some consolation for those she leaves behind. If there is a heaven, it will be the richer for her presence. Emily’s life is an inspiration to continue to campaign for proper recognition and treatment of the devastating illness that is severe M.E. Her work lives on, and others must now take up the cause with redoubled efforts. Emily Rose - may flights of angels sing thee to thy rest!

July 2012