The years go by, and life for ME sufferers is still difficult: there’s little or no ongoing specialist medical support, and very sick patients are left to fend for themselves; patients are regularly turned down for benefits, denied access for house visits by doctors, accused of school phobia or truancy by teachers, because so many medics don’t believe that ME is an organic disease, and confuse it with stress-related exhaustion. Graded Exercise Therapy continues to be prescribed; a high percentage of ME patients continue to be damaged.
This year, on the 25th May, worldwide, ME patients are hosting a ‘virtual protest’. Since so many of us who care about this are too ill to protest in person, we are sending our shoes, which will be placed outside in Washington, London and other locations as a visible sign of the millions missing.
As soon as I heard about it, I thought about my trainers. They are the shoes that represent to me so much of what I am missing from my old life – running, independence, freedom – and they also represent the failed ‘cure’ of exercise. They gave me life; they damaged me beyond repair.