There is a place beyond anger

Greg Crowhurst 9^th June 2008

There is a place beyond anger. While my wife sits, hunched in pain, while there is nothing I can even make her to eat, while she sits tormented by noise, by movement, in silence, Andrew Dillon, Chief Executive of NICE , through my MP, Norman Lamb, writes to me. He says :

“ Our guidance does not recommend CBT/GET for those with severe ME/CFS, instead it recommends activity management administered by phone, email or in person, to be reviewed regularly and often.”

Activity management - oh, so that is what she needs ?

"Activity management", as recommended by NICE, is based upon the three principles of :

• prioritising,
• planning and
• pacing.

Where, I wonder, would Mr Dillon begin ??

No matter, do you know what my wife’s response would be “You probably cannot imagine what it is like to be trapped in a cycle of never ending opposite :

• Where rest leads to increased dysfunction
• Where sleep leads to a complete ceasing of your body’s ability to move and an agony of increased pain.
• Where touch, noise, communication, even tenderness are experienced as an assault on your physical and mental processes.

If you want to engage with people with severe ME then try imagining a world that responds completely the opposite way to your intention, where exercise leads to inability and increasing disability…Get your sleep under control; Control the pain; Pace your energy; Just relax your muscles; these things are nonsense…”

Linda Crowhurst : Get Over It.

NICE's recommendation that people with severe CFS/ME "should be offered an individually tailored activity management programme as the core therapeutic strategy, which may: "draw on the principles of Cognitive behavioural therapy and Graded exercise therapy (1.9.3.1) , is extraordinary, and has led to the guideline being condemned by many patient groups.

There is a place beyond anger :

• when I heard that Action for ME are calling for more, and better trained “therapists” .
• when I wrote to my local group , ME Support Norfolk , and asked them to tell me exactly what they are doing for the severely affected and they responded : “This question cannot be answered directly, since "the severely affected" is an abstract concept.”

I am an artist. Yesterday I painted my rage : my eyes are tight shut, my brow knotted up, as if in agony, my mouth wide open in a teeth-bared scream.

There is a place beyond anger, where I sit, for hours and hours, every day, just holding my wife, when I can. Trying to ease her suffering torment.

Alone and off the radar..