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Showing posts from December, 2010

2011 : a wish-list.

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 approachThat 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 announcement , stand-…

Darkness

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 is the 10% that fuels m…

In support of Kevin Short

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 believe in publishing a wide spectr…

Breakthrough Prayer Midnight 24th December 2010

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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 the Redemption of t…

Breakthrough Prayer 9pm Saturday 18 December

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, held in the safety of our loving , 
though …

Worse afternoon

 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.

Today's a ground-breaking one.

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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 made.

The Academy of Nutritional Medicine (AONM) a…

Breakthrough Prayer 9pm BST Saturday 11 December

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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

Breakthrough Prayer Circle 9pm BST Dec 4th

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This evening, as we pray theBreakthrough 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.


Amen.

Breakthrough Prayer Circle 9pm BST Dec 4th

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This evening, as we pray theBreakthrough 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.


Amen.