Showing posts from November, 2010

Breakthrough Prayer Circle 9pm BST Nov 27th

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

Speak Your Truth 17 Years of Caring for Someone with Severe ME As Dr David Bell famously said ( ,)  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...

Your Truth

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.

Breakthrough Prayer Circle 9pm BST Saturday Nov 20,2010

 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 :

New Blog

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 :  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  published ,or what ?? Decades of suffering inevitably lie ahead;  I have to do something about it. You need

The dialect of desperation

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). He writes , “I know it wasn’t my polished prayers as a p

Stakeholder Response to NICE CG53 three yearly review

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 . " that   Clinical  Area 3 ,  management,  concludes that : " There is currently no new  published evidence t

Breakthrough Prayer Circle 9pm BST Nov 13th

We pray tonight for genuine hope that there will be a change in attitude and  Government policy towards biomedical research into ME and a proper biomedical service for all. We keep in our hearts and minds especially at this time the review of the NICE Guidelines and Professor Hooper's formal complaint to the MRC : May truth, justice and integrity prevail. Lord  we ask for Healing we ask for Hope we ask for Strength we ask for Wisdom we ask for Knowledge we ask for Discernment and Your Light to shine brightly on all injustice and untruth surrounding ME we give you thanks knowing that You hear us and trust that goodness will prevail. Amen And we continue to  pray the  Breakthrough Prayer  ,  with absolute trust and hope in our hearts. Amen.

Deadly Spin

Deadly Spin: An Insurance Company Insider Speaks Out on How Corporate PR is Killing Health Care and Deceiving Americans Greg Crowhurst 8th Nov 2010 (permission to repost)  I burned the dinner last night, so enthralled  was I by Time magazine's  ( Nov 15 p. 20)  review of Wendell Potter's  Deadly Spin: An Insurance Company Insider Speaks Out on How Corporate PR is Killing Health Care and Deceiving Americans ,    which is finally  out this week : Nov 9th. Flinging open all the windows, trying to get rid of the smoke, I was praying that  a lot more smoke and fire will be generated by this  blazing expose of the medical insurance industry.   Potter, according to Time  :  " exposes how corporations manipulate public opinion in the service of shareholders ,forming  front groups, touting misleading studies and enlisting sympathetic media types to further their causes." ..It was like reading our life story. For anyone with ME, these words put in a nutshell

Wedding Anniversary

Today is our 17th Wedding Anniversary; it's 2 pm. At three we will light the candle we first lit 17 years ago, in the Church where we got married , renew our commitment to each other and send light down the year. It is two pm. All day Linda has been lying in  deep physical  torment . It's Saturday. On Monday , the psychiatrists will go to their multi-million pound clinics  and spread their multi-billion dollar lies about ME.

Breakthrough Prayer Circle 9pm BST Nov 6th

Breakthrough Prayer Circle 9pm BST  Nov 6th 2010 Boundaryless, I float in a sea of emptiness I feel less than real I know less than before I am physically limited yet limitless I am immersed in God I flow with Him He saves me from nothingness I am complete in Him He holds me and I am someone He loves me and I am alight with love He heals me and I am at peace. Linda Crowhurst A Prayer for this evening : We thank you for this time to come together in prayer May we find healing today and hope for the future Lord may the power of the Spirit uplift and inspire us all may it change hearts and minds and bring radical change to the current  oppression  of people  with  ME. We add this prayer to the Breakthrough Prayer  , it is so important that we keep asking, keep hoping, keep praying that change will come and soon. Every time we pray we link to Love and it is this love that will transform all and it is because of this love that we know our prayers are

Rehabilitation is not synonymous with Recovery....

"Rehabilitation is not synonymous with Recovery...." Two otherwise hidden moments in a carer's life yesterday . Reading the quote above, from Barbara Wilson, University of Cambridge,  in Time magazine and going "Wow", for it was like stumbling across the meaning of the mysteries,  then shortly afterwards lying with  my wife on the bed; it's  early afternoon and we  aren't  going anywhere.  My wife  doesn't know how to cope with the pain she is in  a second longer. ..That's us. ME patients are continually denied physical treatment, the orthodoxy is to administer CBT and GET - rehabilitation, while not dealing with the underlying disease process. Of course my wife has all manner of things going wrong in her body, her physical suffering day to day , her quality of life is  petrifying.  Alcoholism, you know,  is even treated as a physical disease , but ME , flying in the face of any measure of reason is still put down to wrong thinking

Ride the wave !

Ride the Wave ! My day started long before dawn yesterday, with Linda so ill on so many levels ,it was all I could do not to explode with not knowing how to help her, with my helplessness in the face of overwhelming suffering. Of course I could not attend the demo in London;but looking at the pictures last night I had to wonder would I have crossed the street and joined in  ? With great respect and all credit to those who struggled, at who knows what cost to get to London  , I really do not want the see the one  I love  portrayed  as Micky Mouse or as  an object of contamination . A friend has emailed to say they hope passers by were not confused by the message being given out. That said, there is something wonderfully uplifting  about  those pictures on standup2me, the XMRV issue does seem to have  come over and there is  a  strong,positive  presence that you can feel. The imagery issue though cannot be ignored. It's estimated that 40 protesters attended - but how m