In this piece, below, Greg Crowhurst refers to Action for ME’s call for more, and better trained GET “therapists”.
Read Action for ME’s Awareness Week Press release:
Read the joint statement from The ME Association and The Young ME Sufferers Trust:
*Ed: The Chair of Norfolk ME Support, Mr John Sayer, has been offered a right of reply on this site.
There is a place beyond anger
by Greg Crowhurst
9th 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
Activity management – oh, so that is what she needs?
“Activity management”, as recommended by NICE, is
based upon the three principles of:
* planning and
Where, I wonder, would Mr Dillon begin ??
No matter, do you know what my wife’s response
would be why not read it on:
“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
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
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 (220.127.116.11), is extraordinary,
and has led to the guideline being condemned by
many patient groups.
There is a place beyond anger:
1. when the psychiatric lobby are reported declaring
that ME no longer exists.
2. when I hear that Action for ME are calling for
more, and better trained “therapists”.
*3. 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
“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 physical torment.
What hope is there of getting proper medical tests
and treatment or validation for this severely
disabling, multi-dysfunctional, neurological disease,
when these are the attitudes and views of the
people who represent ME to the world ?
When severe ME sufferers are alone and off the radar?