The stench of spin

At who knows what cost, us carers and patients have thrown everything into an NHS "consultation" process, that quickly became clear was pre-determined from the start, in favor of a CBT/GET-based NICE service. Now the cards are on the table and we carers and patients must choose how to respond - do we continue to co-operate with the NHS or not ? If not, what do we do next ?

These are momentous, difficult decisions that will have ramifications not just locally but for all people with ME. At last patients and carers are taking a stand against the insitutional neglect of this horrible disease.

Following on from what I was exploring yesterday, I have been hugely uplifted this morning reading a passage on activism from Thomas Merton, who was a contemplative American monk.

He advises : "struggle less and less for an idea and more and more for specific people...In the end it is the reality of personal relationships that saves everything." THIS is the key to ME activism. Don't fight so much for the Canadian Definition as for one person - then its real, then there's no stopping you, then there is no barrier to truth.

Dear Jim,

Do not depend on the hope of results. When you are doing the sort of work you have taken on, essentially an apostolic work, you may have to face the fact that your work will be apparently worthless and even achieve no result at all, if not perhaps results opposite to what you expect. As you get used to this idea, you start more and more to concentrate not on the results but on the value, the rightness, the truth of the work itself. And there too a great deal has to be gone through as gradually you struggle less and less for an idea and more and more for specific people. The range tends to narrow down, but it gets much more real. In the end, it is the reality of personal relationships that saves everything…

Merton's advice on serving truth, not a myth and dealing with the inevitable dissapointments along the way, is exactly what I need to hear this morning.


  1. You're right Greg.

    If we fight for a 'group' of people then our cause is endlessly tossed into the soup of fatigue - where it drowns.

    So yes, the struggles of ME patients should he honed (directed) at individuals like Linda, whose plight cannot possibly be denied under an umbrella term.

    No person with a soul can ignore someone with severe ME who is (obviously) seriously ill, and yet we remain invisible due to serious levels of disablity and being out in the community rather than in GP surgeries - because we are too ill to get there as patients

    Ultimately we are humans, and not a /// forward slash anything. CFS/ME. I note ME is put to the back of label.

    As I infer, this neglect is designed in and not created by people who stumble into mistakes.

    Speaking out and making the obvious, obvious can be done so simplistically by showing and telling other people's plight.

    Great post, as ever.


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