Stonebird

I feel so low So small So dark Yet so huge So vast and swollen, By numbness, Pain, Paralysis Pushing me outward, Toward the void I cannot feel myself I cannot be myself I am no longer who I am. I am stuck to the floor, to the chair, My limbs are stuck to each other. There is just separation. There is just emptiness. There is just agony. There is just nothing. I am disappearing by degrees Each time it comes. It is an intolerable, physical assault On my being. I find I can no longer bear even less than I used to bear Yet more, somehow, even so, because it keeps adding on and adding on; The thousands and thousands of times Over all the months, the years, the decades. Continually adding up Greater and greater still, Along with the denial The unhelpfulness The negation The neglect The abandonment The harm The ignorance The cruelty and the impossibility of it all. Yet still I am left struggling Not really knowing how to bear it, Not really knowing the best way through it, Not even knowing

 It was terrifying and jaw dropping to watch this address by Peter White : jaw-dropping because of the way the truth was distorted to fit a rigid, maufactured psychiatric narrative; I have dealt with some of the issues raised here : http://carersfight.blogspot.co.uk/…/pseudo-science-in-uk-re… . The chilling part was White's "we're responsible" admission , the throwaway remark at the end, that they "transposed epidemic ME into endemic ME"- I have been trying to make sense of t hat : "epidemic" describes a disease that's widespread and "endemic" means a disease that is found in a certain place and is ongoing; that is not how I would describe the insideous process. It would have been much more accurate had White admitted they " expropriated ME and tried to transpose it as CFS." With disasterous results, not least for the PACE Trial investigators. So many lives ruined, destroyed. But, here is the irony,

It is hard not to be very angry at all the psychiatric misdirection, that has so dominated ME for themlast three decades, condemning seriously ill people, like my wife, to a life of constant suffering, that few could possibly comprehend, it is so far off the scale, without any investigation, any treatment or any hope of a cure. How much harm has been done ? Will anyone ever be held accountable ?

Now that it has been so discredited, so comprehensively torn to shreds, it is hard to see how the psychiatric lobby can defend the PACE Trial, or ever be taken seriously again. Their toxic research has been exposed as vacuous, their statistics as zombie science, their work as incomprehensible and amateurish. You would think nobody would take those psychiatrists seriously again, but tragically we live in a world where it is not truth but spin that counts. Given the vast resour ces at their disposal, especially their access to the media, expect this to be spun as a tale of well meaning scientists doing their best to help a hostile patient population, never mind the decades of deliberate manipulation, the denial, the turning a blind eye to the overwhelming physical evidence , debunking the psyche's insulting claims that ME is a result of misguided thinking.  Never mind the horrific devastation, pain and suffering people have had to endure as a result. Never mind the

The issue, regarding the 'PACE' trial, for the ME Community, as always, is about truth and the integrity of science. Sadly, it is psychiatry that has worked for more than three decades to deny the physical existence of ME, by hiding it in a poorly defined cohort of patients,with a very wide ranging definition of fatigue. It is psychiatry, that , without a credible shred of evidence, has aggressively sought  to have people with ME, a WHO defined Neurological Disease, classified as mentally ill, victims of misguided thinking or hysteria and misdirected the focus away from the most serious and disabling symptoms, towards a generalised fatigue focus. It is psychiatry that has forcibly removed patients, against their will from their homes and consigned them to psychiatric institutions, with tragic and even fatal consequences. It is psychiatry that has encouraged the proscription of tests that might help identify physical illness. It is, then, imperative, for the ME Commu

What a challenge it has been- converting "Notes for Carers" to the Kindle format- it has taken me weeks; anyway it is done and is available right now in the Kindle Store  !! The book retains the charm of the print version - although not so many illustrations, in addition it contains three extra, chapters including an extraordinary account of the dreadful impact of cognitive dysfunction in ME, which is so often dismissed and underplayed as "brain fog". There is also a new chapter on coping. It is a joy to introduce the Kindle edition of "Notes for Carers" !!! Thanks again to all who contributed and made this book so special and to everyone for all the incredible support and wonderful affirmation I have received. xx http://www.amazon.co.uk/gp/product/B017MNVCKE?keywords=Severe+ME+%3A+Notes+for+Carers&qid=1446813809&ref_=sr_1_1&s=digital-text&sr=1-1

How do you convey how very ill you are, When words seem to lose their meaning,  as the illness takes a tighter and tighter grip on you? First you say, "I am ill." Then you say, "I am very ill." Then I am "seriously ill." Then I am "severely ill." Then I am "worse." Then I am "very severely ill." Then I am "profoundly affected." You try to explain each symptom, But how do you convey multi- level pain, impacting with different sensations? How do you convey it is somehow more complex, torturing, intense Than anything you would know? "Pain," I say. "Burning pain. Throbbing pain. Itching pain. Numb pain." "Worsening pain." "Screaming pain." "Deterioration." Then "more deterioration." Then "worse deterioration." "Agony, torment, torture, literally." Then there is the hypersensitivity. "Acute." "Extreme." "Unimaginable&q