Missing years – ME/CFS Awareness

These squares have been lovingly crafted in a bid to raise awareness of the little understood but devastating diseases known as ME (Myalgic), Chronic Fatigue Syndrome and Fibromyalgia. They show the number of years that sufferers have lost to these illnesses and will be featured on the Missing years Facebook page throughout May.

Many contributors are too unwell to leave their homes (and sometimes their beds) very often, too ill to work or take part… in sporting or social activities. They range in age between 17 and 69 years old and live mostly in the UK, the USA and Australia.

The total number of years lost to illness by the 55 people who participated, depicted in the squares, is 1109. On average that is 20 years and 2 months per person.

This is even more shocking when you consider that some people have only included the more severely affected years when life as they once knew it changed completely, ignoring those times when they were experiencing symptoms but still able to push on regardless. The squares depict lengths of illness ranging from 4 to 45 years, though one participant has been ill for all of her 69 years: she couldn’t bear to put such a high number.

Making the Squares

A few of the techniques used to make the squares include: paper cutting, digital portraiture, marbling, collage, ink and wax, coloured pencils, chalk, pre-loved birthday cards, buttons, flowers, photography, knitting, crochet, sewing, cross stitch, origami and a pretend concrete block.

Some people required help from more able participants to make their square. Out of the hundred people who intended to make a square, only about 40 managed to complete one even with the offer of help. Several people noted how difficult it was to complete the square physically even over a period of months, and many found it emotionally challenging.

We have found it moving looking at other people’s squares, we hope you will too.

How are you planning to mark ME awareness day / week / month this year? Tell us and we will let everybody know.

International ME Awareness day 12 May 2017

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