Stonebird

The PACE Trial : these concerns were raised by Stonebird in 2013. 1. It did not study people with ME : the PACE Trial studied: “CFS defined simply as a principal complaint of fatigue that is disabling, having lasted six months, with no alternative medical explanation (Oxford criteria)”. http://www.meactionuk.org.uk/Hoopers-initial-response-to-PD… . 2. It wrote its own version of the London Criteria , so that they are virtually identical to the Oxford Criteria. 3. It implied that it was studying people with ME. The PACE Trial Identifier is clear: “Myalgic encephalomyelitis is thought by most to be synonymous with CFS” (PACE Trial Identifier; 2.1). http://www.meactionuk.org.uk/Hoopers-initial-response-to-PD… 4. It recruited a high number of participants who suffered from a psychological disorder.  http://esme-eu.com/…/the-pace-trial-do-you-also-get-so-tire… 5. It made sure that the majority of participants have exceptionally high expectations of CBT and GET. ...

I wake paralysed. I sit, I am paralysed. I move, then I am paralysed. Noise hits me and I am paralysed. I eat and I am paralysed. I lie down, I am paralysed. I am too still, I am paralysed. I am too hot, I am paralysed. I am too cold, I am paralysed. My stomach is paralysed. My eyes are paralysed, my legs are paralysed. My feet and toes are paralysed. My mouth, my lips, my jaw, my throat are paralysed. My face, my eyes, my eyelids are paralysed. My arms, my hands, my fingers are paralysed. My chest muscles are paralysed. My left side is paralysed. I am totally paralysed. My day is paralysed. I am in a continuum of paralysis.

There is nothing romantic, you find, about witnessing your loved one’s suffering. It is coarse, raw, sweaty, smashes into shards your fragile ego, strips naked that which you would never expose, leaves you almost unable, after decades, to bear another moment of it.  I am learning about limits. My website, Stonebird, is rarely updated now. I have journeyed way beyond whatever ability I had to campaign. I survive here, far out of reach, on a vicious distant edge, that few , if any, care to know about.  How ? Suffering reeks of despair. You must never let it take you over. I am re-reading Victor Frankl’s masterpiece on how to rise above suffering, “Man’s Search for Meaning”. He writes, out of Auschwitz, that a man has an opportunity “to make use of or forgo the opportunities of attaining the moral values that a difficult situation may afford him.”  You can face your situation with dignity, you can find meaning and purpose, you too can attain spiritual freedom and insight,...

Paralysis seems to capture my thoughts And lasso them into an invisible plastic bubble That floats formless in my mind. I know inside what I want to say. I can see you before me vaguely through dark staring eyes Or sense your presence when lids are locked tight Yet the words will not marshal themselves together And I cannot make them comply with my will So that they can come marching down to my mouth They will not spill out into the world To make coherent sense. The lips lie fallow, unused. They are numb. They will not move. The breath is shallow Not enough breath then to give sound to the voice? But no It is more than this. The thoughts, though perfect, whole and complete Are stuck, as if in Suspended animation. There is no path for them to the outside world. It has mysteriously vanished. And you cannot know then How sad I am How distressed I am To be like this Yet again How much I need your contact But cannot bear your physical presence How amazingly interesting I am inside Trap...