ME Awareness month

May, ME Awareness month, has come round and so it is time for me to write about ME again.

My daughter Rosie, for those who do not know her, was an active person with a full social and working life until she got flu three winters ago.  Six months later she was diagnosed as having CFS/ME. She has been living with me for eighteen months, in official terms I am her carer.

Rosie has had a further decline in health since my post last May. She can no longer manage the stairs and so she lives in two upstairs rooms, her bedroom and a small room with a sofa, across the landing from the bathroom. She does not go outside, she does not have any visitors, she does not take phone calls, she communicates with me mainly by text or email. Family and friends have between us packed up the contents of her London flat, let it out, and disposed of her car.

I will be going to the Millions Missing event in Birmingham on May 12th, International ME Awareness day. Rosie has asked me to take a label saying “Rosie, 4 years, missing work, family, outdoors”.

Away from the personal: the past year has seen new developments in research into ME. The NIH has started an intramural study on the clinical and biological characteristics of the disease.  The Open Medicine Foundation’s Severely Ill Big Data Study aims to find diagnostic biomarkers and treatments.

I have made a deliberate attempt to make this post factual and to keep emotion out. Here are some of the words that have not been allowed in:

cruel / sad / ill / weak / pain / anxiety / loss / confused / suffer

patience / strong / hope / endure / courage

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