There is a place beyond anger: Greg Crowhurst

AfME GET quote

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:

https://meagenda.wordpress.com/2008/05/12/afme-survey-results-12-may-2008/

Read the joint statement from The ME Association and The Young ME Sufferers Trust:

https://meagenda.wordpress.com/2008/05/15/joint-statement-mea-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
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.

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
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?

Advertisements

One thought on “There is a place beyond anger: Greg Crowhurst

  1. ‘There is a place beyond anger:

    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.”‘

    There is a place beyond anger alright, one where people put selected out-of-context quotes like this on the internet!

    Greg did not write to “M.E. Support-Norfolk” with his question, but to one of our committee members. The above quoted answer to that question came from me, which I then had to elaborate in a follow-up e-mail, since Greg, in his response to me, had clearly misunderstood what I meant:

    “Yes, I realise that by “the severely affected” you mean “severe M.E. sufferers”. I wasn’t trying to be facetious (if that’s what you thought), only pointing out that your question was too abstract to be answered in a direct way: we do what we can for individuals, with their individual needs.

    “As for the general picture, we follow our constitution’s Aims and Objectives, which are ‘to provide information and support to people with M.E., their carers, families and friends; to raise awareness of M.E. locally within the media, health care organisations and the general public; and to campaign for more recognition, research and better care and benefits for people with M.E.’

    “I can’t go into many specifics here because I can’t remember them all and I would need to go through all our committee minutes, correspondence and back issues of MEMO (our newsletter) to compile a comprehensive list.

    “Off the top of my head I can refer to the talks by Dr Carruthers and Prof Hooper we sponsored in 2005, along with the DVDs produced from those talks and distributed to health centres and surgeries throughout Norfolk; the various speakers (eg Betty Dowsett, Jane Colby, Nigel Speight) we have had following our AGMs over the years; leafletting campaigns we have conducted, usually in M.E. Awareness Week; putting our literature in hospitals and surgeries; informing the county’s MPs; lobbying various departments within the health service, including the PCT; issuing press releases and writing to the media; and challenging the DWP, NICE etc.

    “I don’t know that we’ve done anything specifically for the severely affected as such, any more than we’ve done anything specifically for the mildly or moderately affected. We just do what we can, when we can, on behalf of M.E. sufferers generally. Of course, in day-to-day individual practical terms, that means for our members, since we are obviously not in contact with non-members so don’t know what their specific needs are.

    “I was helpless, bedridden and almost praying for death in the first few months of becoming ill. Thankfully, I improved gradually for a year or so (and honestly believed at the time that I was ‘recovering’ and would soon be back teaching). However, since first reaching a peak back in 1995 I have slowly but steadily declined and live with the realistic possibility that I will regress back to that earlier hell. If things continue as they are, it is only a matter of time before I am unable to continue producing MEMO, serve on our committee or do anything at all on behalf of myself or other sufferers. In the meantime I (as do the other members of the MES-N committee and individual members of our group who are able and motivated enough) keep at it, and it consumes the major part of my life.

    Best wishes to Linda, with whom I fully empathise.”

    Since Greg’s response to that e-mail was, “Thanks John. Very best wishes,” I was absolutely shocked to read his “ME -there is a place beyond anger” posting, especially when he lumps together “MES-N”, the psychiatric lobby and AfME:

    “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 ?”

    Greg should hang his head in shame. (Or at least join one of the Norfolk support groups, if he thinks he can do any better).

    BW
    John Sayer
    (Chair, “M.E. Support-Norfolk”)

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s