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Showing posts from May, 2011

Breakthrough Prayer 28th May

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May 21st 2011We hold everyone who is suffering with ME and everyone involved with them in the Heart of Love today.We ask for miracles we ask for help we ask for hope We ask that each person will receive their own special breakthrough for their own specific circumstances as we pray in trust and power the Breakthrough prayer.
We welcome all newcomers to the breakthrough prayer circle and open our hearts in prayer to embrace each other and pray in the oneness of love.

Breakthrough Prayer 9pm BST Saturday 21st May 2011

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May 21st 2011 Tonight we pray for all people who have lost a pet or a friend or anyone who has supported them, particularly through their illness. May they find hope and spiritual comfort to ease their burden of grief and loss.I gave my son for you I cried those tears of pain with him I held him gently in my arms I loved him back to life For I am the one who loves I love you all I love you always For I am the one who loves in spite of all the pain.

How do you survive ?

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The recent death of our dog, our comrade this last eleven years , has stripped bare the  isolation we endure. How will we cope ? 
Invisible, mostly, the pulverizing isolation that  sufferers and carers experience in Severe ME  is compounded by being virtually incomprehensible. Who can possibly understand  this  being separated,this  being  absolutely cut-off  from even the simplest ordinary things ?
My wife can be in a room but not be able to access anything , because of the disability on all levels that Severe ME  brings. Into that vast gap our dog brought his furry nose to be stroked and his  ears, so expressive, to be tickled; it made all the difference to my wife's quality of life.
The  carer's isolation is also  fathomless.  Who knows what  suffering they endure,  through the almost inevitable, decades-long process ,  of becoming cut off from everybody and almost everything  ?
Through people just  not understanding the dreadful impact of Severe ME and why the carer cannot see…

Amos RIP

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Can grief be this huge ? I had no idea. Tears are falling onto my knees as I type, the screen blurry. How hard it was to get up this early morning and know that our beloved Amos is dead.

As we both held him , through the long hours of his dying last night , I seethed inside with rage. Linda never was able to take Amos for a walk; not once in the entire eleven years he lived with us. Linda never knew those places only a dog can show you. The wintry dark nights, with things banging in the wind, the early morning sun on a window pane, the mist rising over the fields, the byways and pathways behind Tesco.

The golden sands, only four miles away; in the forthcoming  film "Voices from the Shadows", about the lives of people with Severe ME;  Amos lives forever, on that beach with me.

No more will he take me walking.

No more will he cuddle his nose into Linda's paralyzed hand when she awakes.

Amos knows more than anyone about Severe ME. In his own way he payed the price,but  he w…

Breakthrough Prayer 9pm GMT Saturday 14th May 2011

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May 14th 2011 Today we continue to pray for all those who are struggling.
The body of Christ holds every name holds every moment's pain represents eternity before our very eyes if you could dissect it, somewhere, hidden away; in a tiny molecule or perhaps an ephemeral electron, you would see yourself and feel with absolute certainty that He had touched you He had held you He had loved you just as you are right now and you would know that this is True.Linda Crowhurst

Stonebird ME Awareness Week Video 2011

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Breakthrough Prayer 9pm GMT Saturday 07 May 2011

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Linda is too unwell today - dreadful pain-  for us to write any prayer or reflection for the Breakthrough Prayer .

Next week is ME Awareness Week; we  hold the whole ME Community in our prayers. Let us pray for all who are suffering so terribly- without any hope of treatment, respect or  cure.

We will join with you, in prayer,  at 9pm.


The Breakthrough Prayer by Theresa and Pauline

God our Father, we love you and know you love us. Today with one voice we beseech you to help us in our suffering.

May we bathe in the light of your love and healing, giving us strength to get through each day. By the power of your Holy Spirit uplift our carers and lighten their heavy load in dealing with this unrelenting illness and their own despair.

Enfold in your special love, those who live alone enduring further isolation and loneliness. Dearest Father we pray fervently for a major medical breakthrough in ME.

Bring your Divine inspiration to the researchers of this terrible disease, which is sweeping acros…

A letter to our local LibDem Councillor , on the eve of the UK Local Elections

(We were very pleased to receive a  positive,  immediate  reply from Norman Lamb MP, Nick Clegg's Chief Political Advisor, to this letter).
 We are thoroughly disappointed with politicians and politics ;  specifically the constant neglect and harassment of sick and disabled people  over the years.
Having a disease that is  neglected, not treated , not adequately tested for, nor treated biomedically , despite being a classified neurological disease,   and having to constantly endure deliberate  misrepresentation in the press and medical journals,  and  in Govt policies and NHS clinics, as well as our  disappointment in  the LibCon coalition and its attitude towards disability and benefits specifically;   it is particularly galling to read your pamphlet that came through our door this weekend.
 Where are the policies locally and nationally that show valuing to disabled and carers.? We do not see them.
We feel that despite the Lib Dems and in particular Nick Clegg having awareness of the…

Don't bother me

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Someone once said it's the only love song you ever need; I still cannot listen to "Jersey Girl" by Tom Waits without a shiver ;  I have never heard such a simple,  powerful expression of love.

As the song says : being in my angel's  arms is all I need "..she gives me everything". My wife and I are utterly in love.

"Nothing else matters in this whole wide world."

It was okay at the time, but how it got to me yesterday. I met someone I  haven't seen in ages - for I have been nowhere for ages.

"Are you getting a break" she kept saying, well meaning. "After all you have to look after your sanity."

Sanity....?? Have you any idea.....?

As if  I would say to her , oh are you getting a break from your husband ?

So, I ended up just out of it yesterday. How frail we are.

...you need to be so careful, when trying to help.



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A sea of compromise

We're all swimming in a sea of compromise, called " chronic fatigue syndrome"  and floundering right in the middle of it are the most Severely Affected; it's a right mess.


Nobody sees the people who are most  ill, nobody hears from them. The ones  who have the most severe neurological symptoms are invisible; while there  are  many wrongly diagnosed people who think they have ME . It is not helping.
Thank God for Natalie Bolton's forthcoming film : "Voices from the Shadows." It has  shaken me to the core; I am shaken still by it. If anything has the power to make the difference, it is this footage of unadulterated torture .
There really is a vast difference in the experience of the Severely Affected  sufferer who is extremely incapaciatated all the time and that of someone who is tired all the time. 
Whoever heard of a disease where the most Severely Affected  are offered nothing and the less Severely Affected  are poorly defined by an ambiguous diagnosis th…