Our chairman, Neil Riley, wrote this in the winter 2014 edition of our membership magazine, ‘ME Essential'.
I was too ill to meet her so my daughter, Rachel, went and took along her IPad. And so it was that on a cold, wet Saturday morning, Kate and I had a “FaceTime” video linkup as she sat in an Amsterdam coffee house whilst I was on the sofa at home.
I said I was so sorry that I could not make it to Holland to see her but explained that I was too ill with my ME. “Oh” she said, “you need to try that Graded Exercise therapy, it was in the newspaper the other day. It can cure you, you know”.
There was a stunned silence here and a gasp from my daughter Rachel in Amsterdam. What could I say? How do you explain to your sister, whom you imagine after all these years, would know about ME, that such a therapy was much more likely to make me worse than better.
I had to end the” FaceTime” link. I then felt the tears trickling down my face. “How could she”, I thought, doesn’t she know me?
I am not the only ME sufferer whose nearest and dearest have doubted them. It is heart-breaking. Only those who live with us each day or who have taken the trouble to understand what this illness is, can see what our life really is like.
Our quality of life is less than cancer and multiple sclerosis patients up to six months before their death, yet we are treated as though we just lack the will to exercise and pick up our bed and walk. The lack of recognition of the seriousness of our illness is a blight on the medical profession.
This is a powerful message that we must get across. Not only to our nearest and dearest but to the world at large.