A living nightmare

It is not hyperbole to state that my wife's life is a living nightmare- it is not just that her body is thick with pain and numbness, all the time , it is the extreme noise sensitivity that is such a torture - so extreme that I have to avoid making any noise, even the sound of my scratching my head, can cripple her. 

It makes it impossible for my wife to see anyone, yet she is in desperate need of expert help. Except that help is not available. It has not been available for the last 20 years - and never will be until ME is separated from CFS - that is not going to happen any time soon, given the unstoppable ascendency of the biopsychosocial model , which to our horror is dominating the physical research agenda , aided and abetted by the collaboration of AfME , the MEA , clinicians and those screwing it for ME, who should know better, condemning my wife to many more years of suffering, if she survives that long.

Such silence. 

The turning point, in my mind, was marked by an article on the Lightening Process in the current issue of the ME Research magazine, Breakthrough.....

Is this what all our struggle has come to ? I thought.

Where is the leadership that is so desperately needed ?


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