Showing posts from February, 2011

Perrin's point found !

Perrin's point found !
Greg Crowhurst 
28th February 2011

Permission to repost

It was extraordinary enough being seated around a table in the Houses of Parliament with  all the major ME Charities,  but not nearly as incredible as listening, for the first time ,  to Dr  Perrin speak . It was the Gibson Inquiry.

 I was deeply moved. This man spoke with conviction and  a diving   passion.     I was hanging on every word he said; here at last was someone refreshingly speaking sense.

This man was helping  me understand, as never before,  the multi-system dysfunction that is Severe ME.  Later on I would come  to learn much, much  more about  Raymond Perrin's extraordinary commitment to people with ME.

This is what he said  : ME " in many cases is actually a pre-viral condition with a possible virus being the last straw." 
Just let that sink in.
We've all read Byron Hyde, we all know how  the central nervous system is profoundly involved in ME. Dr Perrin helps you appreciate how…

Breakthrough Prayer 9pm GMT Saturday 26h February 2011

Justice for people who are disabled

His Light cannot be put out

He is the Light of the world an immense radiant and pure light that shines so that we can all see the way; so that we can all find God in any moment and evil can never triumph. The Light of the World is present reigning triumphant over death and giving life to all through His power of Love. His radiance will always lead and guide us through any apparent darkness for where the Light of the World is no darkness or evil can really be.Lord in your mercy hear us and help us. We pray for justice, we pray for truth, we pray for protection from any injustice. We pray particularly that the needs of the disabled will not be abused or go unmet in these punative economic times. We ask that this Government think again about its policies towards disability, knowing that nothing is impossible to you Lord, in the power of united prayer. Amen.

Pace Trial : the facts at a glance :

Pace Trial : the facts at a glance :
Updated : 25th Feb 2011
at best, PACE is telling us that the two main therapies currently recommended by the National Institute for Health and Clinical Excellence (NICE) are only moderately effective.” Action for METhe results of the PACE Trial may mean that patients who have genuine ME as opposed to chronic “fatigue” will continue to be denied appropriate investigation and treatment; they may be deprived of State benefits necessary for survival; their insurance claims may be rejected, and they will be condemned to an even lower quality of life.” Professor Malcolm Hooper
1.The PACE Trial reports that patients who received a six-month course of cognitive behavioral therapy (CBT) or graded exercise therapy (GET) had improvement in self-reported symptom scores at higher rates than those who were provided specialized medical care alone (SMC) or adaptive pacing
therapy (APT).

2.The PACE Trial authors acknowledge that the studied treatments were …

Breakthrough Prayer 9pm GMT Saturday 19th February 2011

Feb 19th 2011
PACE Trial

The day after the publication of the PACE Trial results we need not to despair but to place our trust in God's Light and Mercy. I am the Light of the World anyone who follows me will not
be walking in the dark
he will have the light of life
John 8 : 12
This is a wonderful affirmation of Christ's presence with us. We cannot be in the dark, even if it seems that way with earthly eyes, we can see clearly if we look with spiritual eyes that the light of life, Jesus Christ, is with us
This tells us we need not fear, even when all seems dark, because God will never abandon us; he will always be close. Such is the truth that even when Christ died on the cross, God was with him.
The Light of Life is with us. The Light of Life is God's immense gift to us. It is the living force, the light that energises, blesses, guides, is.
It is the light of Truth. The Way to the Father, the Light of men and the Life of men.
Joy indeed.
His gift is endless and boundless.
Joy indeed.

PACE Trial : expensive nonsense


PACE Trial : expensive nonsense

Voices of the people

Please note , this summary is offered as a service to people with Severe ME , who are not in a position to scan the literature. It is offered as a source of information and hope. If anyone objects to their comments being included here, please let me know and I will immediately remove them. Thank you.

On 23 December, NICE deferred its decision on whether or not it will update its guideline on CFS/M.E., pending the results of the PACE trial.

"That the findings of the PACE trial are completely at odds with the patient voice is of grave concern. Treatment for people with M.E. cannot be limited to therapies which only some find effective. Patients need to have a choice of real treatments."   Action for ME


A similar study to the PACE trial, which was carried out in Spain by Dr. Joaquim Fernández SolĂ  in “Hospital Clinic of Barcelona”, and published in January 2011, found NO benefits from CBT and GET when compared to sta…