Stonebird

Tonight we pray the  Breakthrough Prayer   , continuing to trust in God's goodness and presence here with us. Living with Severe ME is a daily struggle, we need His help, we need His Power, we hold onto Him in faith, trusting that miracles can and do happen, trusting that change will come. And so we also pray : Out of all problems All wrongs, all hurts Let healing spring eternally And peace flow in abundance. Amen May we be blessed With confidence and trust In You Lord Knowing that all things Are possible to God. Let us ask with boldness For healing and help Let us ask with confidence In the name of Jesus Christ Amen

Speak Your Truth 17 Years of Caring for Someone with Severe ME As Dr David Bell famously said ( http://www.facebook.com/note.php?note_id=200170205538 ,)  my socks are going up and down. I am so enthused because last night the complete outline of the presentation I shall deliver on Dec 12 at the AONM Conference in London, was finally decided. I have just been typing it up. Wow and wow. Well, I think it's good !!! It's just been great for me to encapsulate the experience of 17 years  into one power-packed hour, with a (gentle) let's rock-the-world   at the end.. So there's a lot of work to do. If I can't get in person, the whole presentation needs to be able to be screened remotely. I don't know how  I am  going to do that  -  yet;  but these old socks  , they are most certainly  up for it right now...

Spending my time working on the AONM Conference presentation for Dec 12, I am very pleased indeed with what I did yesterday. So powerful; not because of me but the sheer force of the material. This is going to be good. Like the tiniest scrap, like a fragile thread, a tender seed, the all-important theme of my presentation is becoming apparent. At this stage I have to do all I can to let it grow,to listen carefully , to  let it tell me where to go with it; I have to handle this cannonade with kid gloves. If I do it right, wow...... So, the theme is Truth.

 We continue to  pray the  Breakthrough Prayer  ,  with absolute trust and hope in our hearts. Amen. We focus on Trust,trust in God,trust in the power of truth to change hearts and minds.We keep our eyes on the truth of this illness,we lift our prayer up to the Heart of Love with total conviction that God hears,that God knows, that God acts. We trust in His Mercy to save us.We trust that the time is now. And all there is is love And all there is love And all there is is love This is my mantra This is my truth This is my way This is my hope This is my path This is my place I return here again and again and again I return here in trust again. Amen Living with ME is a struggle.We look for inspiration and light to guide us.This is encapsulated in this song :

It was just the  seagulls and fields here ,  big, big sky and  me on my bike   thinking I need to take myself seriously as a writer- or I am going to go mad. I write letters to agents , but when I read them later...cringe...that, I realised this morning is because I don't yet take myself seriously  a writer. So I have joined   Litopia  , the writer's colony :  http://litopia.com/  it is me ,then,  being a writer. Yes , yes, yes. This quite hard actually - for being an ME activist is such a large part of my identity : one I need to move on from,  in so  many ways. I've spent at least 10 years working on my children's tale :   The Adventures of Nick Swift . In the meantime I've had two spiritual books published - by mainstream publishers.   Nick Swift  however  is my driving passion. I am talking  back-to-the -wall .  Either I get  The Adventures of Nick Swift  publishe...

Really scared now; that shiver of fear. I look at Linda , so hunched in  pain eyes so sunken, tissue constantly to her mouth to absorb the saliva that torments her day and night , symptoms throbbing.  Not knowing what she can eat anymore.  I knocked out some sort of response to NICE before the 5pm deadline yesterday, but it bears no  relationship to how I feel about their atrocious conclusion that they see  no reason to change the Guideline and I am annoyed with myself.  I am too stressed, too concerned with how to cope though  , to have written much more. Yes, I could have done a lot  better, but it's better to speak up than not, I believe,  and yesterday  was all I could manage. That's all anyone can do. We prayed Saturday night that Malcolm Hooper's formal complaint will be successful; it is the kind of  prayer that  I think Tommy Tenney calls the “dialect of desperation” (pg. 22, Prayers of God Chasers). ...

Stakeholder Response to NICE CG53 three yearly review  Greg Crowhurst  Nov 13th 2010 In accordance with the stakeholder consultation process of 1 to 14 November 2010 concerning NICE’s scheduled 3 year clinical guideline review I write with reference to: 1.        The National Institute for Health and Clinical Excellence (NICE) Clinical Guideline 53 entitled ‘Chronic fatigue syndrome / Myalgic encephalomyelitis (or encephalopathy); diagnosis and management’ published in August 2007. 2.        The related ‘National Institute for Health and Clinical Excellence Centre for Clinical Practice Review consultation document’ dated 1 November 2010 .  For the reasons listed  below , I  am   greatly  concerned that  Clinical Area 1, case definition, concludes that  " no conclusive evidence  was identified that would  invalidate current  guideline  recommendations ....