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...

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 s...

  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 publi...

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 Chris...

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 heart...

 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 ? ...