There is a place beyond anger

From: Greg Crowhurst gregcrowhurst@yahoo.co.uk


There is a place beyond anger


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
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 why not read it on:  www.metrainingco.org.uk


"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.


Thereis 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
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 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?

* * *

Someone once said "depression is anger turned inward".  You are not to blame for your CFS; don't get mad at yourself.  Turn your anger outward, at the doctors and The System who choose to believe, despite all the evidence, that this is just a psychiatric problem.  Put your anger to good use with activism, blogging, letter-writing, etc.

Only by patients getting the word out that there are 5000+ international research studies showing physiological abnormalities in CFS will people learn that it's not just depression or laziness ... it's a very real disease with much in common with polio and MS.