Why Norwich ?

Stonebird :
Why Norwich ?

Greg Crowhurst Sept 3rd 2010
(Permission to Repost)

“The challenge facing us is to learn to perceive and ride the waves of change or else risk sinking in an over-populated pool of confused, dispirited and frantic  people.” Greg Crowhurst ( Community Living Magazine 1993)

It is a fact of life that the only ones who get anything done are those who have the courage to get up and make it happen. For five years we have been fighting the fight of our life here in Norfolk.

Me, I am fighting for my wife who is so seriously ill.

I have tried to make myself look as presentable as possible and with no money and only my convictions to guide me, I am one of the few in this country, it seems,  who has actually got up,  opened the front door and gone and sat in board and meeting rooms , arguing, against all the odds, for a biomedical ME service.

I even led a delegation of ME patients , carers and Professor Malcolm Hooper once,   into a meeting where  the Chief Executive had refused to see us.

I have  met countless times with MPs, other activists and written to the press.

I have  lived and breathed and willed and pushed and am still pursuing  this fight through the formal complaint process. I even travelled once  to South  London and met two biomedical consultants with Norfolk’s Head of Commissioning.

I am one of those who , at tremendous personal cost , including broken friendships and a marriage pushed to the edge of sanity,  finally  got NHS Norfolk to admit that a biomedical ME service and  a biomedical consultant is necessary .

I have  been pushed to my  physical and mental limits doing this.

So yes, this is partly  why InME’s Center is going to be based in Norwich. How many other PCT’s do you know support a biomedical approach to ME ?

But if I have been pushed to my limits,  my God,  that is nothing compared to IiME’s efforts. Never have I known such commitment and courage. Determination ? I never knew the meaning of the word before.

Wow, the power of their vision, wow their  drive to make this center  happen, wow their total uncompromising  dedication to people with ME, wow their capacity to cut through every obstacle with a laser-like belief that you know, this is easy  : no one can argue that with five international conferences under their belt that IiME don’t know what they are talking about, when they say we know what to do.

Again, all of this is all happening  at incalculable personal  cost.

Predictably though, there are those in the ME community who will smugly  knock out something or other on the internet  asking  :” Oh : have you done this or that ? Oh : have you consulted him or her ? Oh : have you considered here or there ? “ in a typical  self-satisfied, destructive  way.

 It is exactly this attitude  that resulted in the  throwing away , the utter rubbishing of of  best chance the ME Community ever had : the Gibson Inquiry .

Now I’ve played my part, IiME are playing theirs here in Norfolk , but the giant among us, the power and the engine is Ian Gibson. Shame on anyone who dares question this man’s extraordinary personal commitment to people with ME , who have "concerns", hell : even after all the vitriol, the slander that he has endured, he is in there,  fighting on the street  with us. This is a successful grassroots struggle in every meaning of the term.

We are busy  making history here.

The only question is : why is this not happening everywhere ? What has everyone else been doing ?


  1. "What has everyone else been doing ?"

    I've been housebound and often bed bound with severe degenerative M.E.and fibromyalgia for 24 years now, that's what I've been doing Greg.

    My husband has had a breakdown trying to cope with a stressful full time job with long hours, three children and my illness - that's what he's been doing Greg.

    When the centre opens in Norwich I will not be able to attend, I'm too far away. I believe this illness, that is a form of painful living death, is slowly killing me.

    We give what we can to MERUK & IiME (who are brilliant) , & I write & sometimes have published campaigning letters to papers when able, but I actually find your implications that the rest of us aren't doing enough offensive.


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