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Beyond Words

It has hit me hard today , the scale, breadth and seriousness
of my wife's cognitive dysfunction. Also sitting beside her this evening, noticing how she tries to ease her massive, crippling pain, now and again with numb, aching fingers.

 There is nothing else she can do. No one has properly investigated her illness. It has been non stop suffering for over 21 years.

 Today I drafted an initial response to last week's paper, widely reported, spreading even more misinformation, about "activity", that has been disproved so many times, it is boring- except that it helps condemn my wife and tens of thousands of others to who knows how many more years of suffering.

 The scale of the injustice being done to people with ME and our relative powerlessness , chokes me. I wish I had the language to express it !

 My worry for my beloved defies description. I sit here today reflecting upon the video, Falling into Severe ME, that I recently posted. Some have said the music is too difficult, too hopeless, too sad.

 Yes it is.