Stonebird

2011 : a wish-list. Greg & Linda Crowhurst Dec 30 2011  (permission to repost) "Daring ideas are like chessmen moved forward; they may be beaten, but they may start a winning game."  Johann Wolfgang von Goethe By the skin of our teeth, we arrive at the end of yet another year of the torture and living hell that is Severe ME. Here is our wish list for 2011 : That the truth of XMRV will be uncovered and revealed. That the NHS will at last perceive the folly of backing the psychosocial approach That medical Consultants will find the honesty and integrity to speak out about the reality of this terrible disease. That the newspapers will lose their bias and stop reporting the psychosocial approach , which charades as treatment and the truth of ME. That ME will finally be treated separately from CFS and that the biomedical truth of ME will at last be acknowledged and scientifically and medically investigated. That the Medical Research Council will stick to its  recent ann

ME is a darkness; when the flat light of reality strikes, the emptiness is revealed : the chair where my wife spends most of her life : no trips to the sales, to Church, to restaurants, clubs, the nearby beaches, with me and the dog; no, just the chair that my wife occupies year in, year out,  in  tear-your-guts-out  agony My anguish. Knowing that Christmas really is too much for her, she is so terribly ill. Our almost total isolation here : how that can hit home ! The darkness, Jung once said, referring to one's mysterious , personal  "dark "side is 90% gold. I always hold onto that. The darkness here is full of infinite treasure. Sure there are times when our existence is laid bare in all its terrifying deathly starkness.  The other 90 % of the time though we enjoy a closeness of relationship  and a depth of life that transcends all boundaries, borders and restrictions imposed by the disease. From our two chairs we soar and touch the sky and stars. It

  In Support of Kevin Short ( permission to repost)   Greg Crowhurst Dec 26 2010 Local ME have apparently  denied  Kevin Short,the man solely  responsible for the Gibson Inquiry ,  one of the  High Court defendants in the continuous case against  NICE,  access to its list;  personally I have no interest in participating  in their Forum, I have no idea  why they made their baffling decision . All I know is that without Kev, we would not be in the leading position we are now in Norfolk. This is the man who got me involved. Kev leaves and breathes ME activism ; he will not hesitate for a second  to pick up the phone and speak to those that matter, those that  can make a difference. To put it mildly, Kev is impatient for change. His "offence", possibly,  could be that he criticized the MEA. I struggle, but I just cannot see the issue. The MEA were simply wrong to have published that absurd  piece by the Kent and Sussex ME Society. Their defense  : "We bel

May you find Peace, Healing  and Hope this Christmas. May we all experience miracles as the coming year unfolds. Today we celebrate the Truth of God's Love - that Jesus Christ, the Light of the World has come into the world and dwells among us. This Light is pure radiance and shines its perfect beauty all aorund. It is the Light of Mercy, the Light of Truth, the Light of Wisdom, the Light of Discernment, the Light of Justice. It brings the gift of Healing, the gift of Hope, the gift of Consolation, the gift of Love to us. The Light is never more needed than now in the lives of people with ME for there is so much disinformation and untruth spread around the true disease that people with Myalgic Encephalomyelitis have. There is so much medical neglect. There is so much injustice surrounding people with ME : a genuine neurological disease, dismissed as a psychological condition.  As we approach midnight , the holiest time of the year, signaling the birth of Christ and

A Christmas message with love from Linda  Christmas is a time of joy for some and a time of sorrow for  others or maybe even a combination of the two. It is a  challenge to celebrate for each of us within the limitations  placed upon us by severe ME . Perhaps we can focus on the  birth of Jesus Christ, the Light of the word, and celebrate  this joy in our hearts, whether or not we can physically join  in with the festivities going on around us.  Think of the child safe and loved , lying in the manger,  surrounded by the animal, visited by the shepherds and  Kings from afar who saw the truth of this tiny child. For He  has come to bless us all, for all time - every single one of us. At Christmas He becomes a frail and vulnerable baby,  dependant on others for everything he needs. How trusting  He is, how accepting of the love given to him by those who  humbly seek him.  Let us open our hearts and minds to this child and ask him to  come in and shelter with us, he

 We strikingly  underestimate the impact of cognitive dysfunction in ME; I was hidden yesterday. She had to struggle alone, to make a decision. I would do anything to have acted differently. So would you if had seen the agony etched into her face.

Stonebird ...getting ready to soar today No one, in seventeen years of almost total isolation,  has had the wit, the intelligence or the courage to try and include us in their conferences. Typically  the international  ME biomedical conference circuit,  revolves around  the same skimpy smattering of medical professionals. Given that no one, to my knowledge, is researching the most severely affected, that , alongside the lack of  any significant patient/carer involvement on the circuit, is a whopping void.  Has it occurred to anyone that we carers and patients might  have something of stupendous value to share ; a few facts about how to live with and cope with this abominable illness, not just survive but actually make things happen ? That we comprehend better than any number of medical professionals , who do not visit the homes of those who have very severe ME, what the sickness is actually like and what works and what doesn't ? No longer. Today history's going to be m

Tonight we pray the  Breakthrough Prayer    especially for all those who are severely ill, untreated, dying from neglect and a lack of respect for their physical illness. We keep in our hearts and prayers all those abandoned people who are so precious to God. We pray for wisdom, knowledge, discernment for the medical profession; that ME will finally be acknowledged for the devastating illness it is. We pray especially tonight for those whose lives are devastated by MCS. We also pray the ME Power Prayer  : Lord be with us now. Help us  pray and strengthen us in our resolve. Be a sure light  guiding us forward Pour out Your Spirit upon us. Give us the gifts of Wisdom and Discernment. May the fruits of our labour truly make a difference in the world for ME. Empower us with Confidence and Hope Hear and answer  us  in our need Lord May all barriers to Truth be overcome May Your healing Power truly flow among us-- May we always do good in Your name. Amen

This evening, as we pray the   Breakthrough Prayer  we especially remember all those people with ME who are dependent on others to get their needs met; particularly during the freezing temperatures and snow . We pray that they will get the help they need, that carers will be able to reach them throughout the bad weather, that all will be able to keep warm and have enough food to eat and not run out . We think of the people who are isolated because of this illness and pray that this unexpected bad weather does not increase their difficulties. May we be blessed with confidence and trust in You Lord knowing that all things are possible to God. May hope always abide in our hearts May love always abide in our thoughts May peace always abide in our actions May joy always lift our spirits. We continue to ask God for a radical change in attitude and policy for people with ME. We continue to hold our prayers in hope and trust and faith, that miracles can and will happen.

This evening, as we pray the   Breakthrough Prayer  we especially remember all those people with ME who are dependent on others to get their needs met; particularly during the freezing temperatures and snow . We pray that they will get the help they need, that carers will be able to reach them throughout the bad weather, that all will be able to keep warm and have enough food to eat and not run out . We think of the people who are isolated because of this illness and pray that this unexpected bad weather does not increase their difficulties. May we be blessed with confidence and trust in You Lord knowing that all things are possible to God. May hope always abide in our hearts May love always abide in our thoughts May peace always abide in our actions May joy always lift our spirits. We continue to ask God for a radical change in attitude and policy for people with ME. We continue to hold our prayers in hope and trust and faith, that miracles can and will happen

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

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  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

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 : http://www.angliameaction.org.uk/docs/willets-hooper-pace.pdf 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: 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