Stonebird

If you seek to campaign for a Public Inquiry into ME you should be very aware of the five myths that underpin official UK ME policy . I have written a report which is available to download from Stonebird : http://www.stonebird.co.uk/myths.pdf

The award of a Knighthood to a chief architect of CFS is one of those moments when you wonder what your life's work has been about. Have all these years of suffering and pain, has the struggle to achieve recognition for ME been in vain ? Is Stonebird , bless it, worth the effort ? Despair  is the unmentionable, the heinous sin. We don't go there..do we ?? Don't we ? These days, since the the New Year Honours announcement I am drifting. On my computer I have a music programme; I  have become addicted to programming loud and intricate drum patterns - reaching  something wild inside, angry - and weeping . Some things are not just wrong, they are evil. The unimaginable suffering that people with ME have to endure , under the skilfully engineered CFS deception is an incomparable evil, that no one wants to know about. The ME population is ignored, ingeniously side-lined  - and now this...

1 Respect  my reality, don't undermine it. 2 Listen accurately to me 3 Don't try and fit me into a theory that negates my experience 4 Never forget there is a post-exertional autonomic reaction in genuine ME and always take it in to account. 5 Look for the  underlying physical dysfunctions in ME and name them accurately. 6 Write  accurate validating helpful medical  reports 7 Do not use the term CFS to mean ME or use any other variation that incorporates CFS in it. 8 Work  in genuine partnership with me if you want to help me. 9 Never dismiss my physical reality  just because you cannot  understand it or misinterpret it through ignorance. 10 Offer genuine support, based on equality of person-hood; anything else is game playing and leads to disconnection.

Once upon a time, Sir Fool'em , one of the Knights who say : “ ME is real..no, not really, ME is real, no not really.. ” came riding through the forest ,his bottom wobbling rather painfully, astride a bold  fence. Although the children rudely laughed, booed and made fun of him, a fat cat ran up : “Come quickly Sir Knight, my mistress needs you.”, he pleaded. “Fear not, I have brought my magic gold standard with me, from Oxford. I do not even have to see the poor woman. Go immediately and throw your mistress in a swimming pool, that should cure her !.” At that the entire village clapped their hands in amazement and the Knight's fame spread far and wide , over hill and dale and throughout the whole land . And the fat cat  lived happily ever after.

We live in a strange out cast world. I cannot engage with normality. Even the simplest thing is beyond my control. Each year , our world reduces. It has come to be normal To live in a bizarre way. My life diminished to living, in a single room , darkened by heavy Noise reducing curtains That attempt to block out my tormentors, Whilst in effect blocking me out further too from ordinary reality It makes sense from here. It is essential , Within the circle of never ending agony And noise sensitivity, Living in a shifting hostile Environment Where every demand Is too much And every sound an unbearable irritation And torment. But from the outside The view must be starkly different Oddly perceived Little understood Easily misinterpreted Too painful to comprehend And leaves us Feeling neglected Isolated And  pariahs In a community That should have been Loving and enriching Yet which is strangely Silent And absent In its support And understanding. Too ill Too odd Too unavailable To engag...

It is the moments when we touch the light within us , that flows from the Heart of Love that transfigures who we are.  In these moments we can see most clearly who we are and know most truly what is True. When light pours in it illuminates all within and without you so that you can see all from a clear perspective - and that perspective is Love. Not complacency or nicety, not romantic or placatory.  This Love is Powerful , Awesome in Nature, it sweeps away all untruth and conditions.  It brings Truth. Not always comfortable , sometimes challenging, but at its centre there also lies a Peace not of the world and a certainty of direction, a deep and profound knowledge that will sweep away all injustice and wrongness and guide you always towards goodness. Transfigurative moments  bring hope and wisdom, Joy and confirmation that the awesome power of God lives with us and works through us, if we can only open , with acceptance and honesty to this most wonderful Truth...