Stonebird

Lying in bed, late last night, Linda sobbing in too much pain, in far too many parts of her body  to cope with, I reflected upon that MEA Survey, with my blood boiling. This is  serious suffering going on here, and there is only me and my arms and my not knowing what to say after 17 years of relentless and deteriorating hell. And now   the MEA have put  out a   document,   entitled   "Managing my ME" - a title that immediately made my toes cringe,  a document  which eases itself down, with a contented sigh, so smoothly, so comfortably into the NICE / Psychiatric paradigm, give or take one or two tweaks, don't you know. You have to wonder, does anyone else inhabit the world of ME that I do ? Inhabitants of ME-land don't mention the "M" word at all, they are far too busy on their lonely quest, turning over rocks in the baking, blinding   heat, trying to unearth some, any kind , of a test or a treatment; anything,  that might ...

My  (Tory) MP has just sent me this : " Thank you for your email and I am extremely sorry to hear about your wife's position.  I will of course do all I can to help you. In the first instance I am writing to the new Health Minister to establish our policy on ME. I would also be pleased to meet you at one of my surgeries to discuss our next course of action. " ..if only everyone would write to their MP and emphasise the need for a biomedical approach !

I wrote to Nick Clegg, Deputy Prime Minister ,  yesterday. Here is an extract : " Before the Election you set out the excellent  Liberal Democrat position on ME : "The Liberal Democrats have long argued that funding and research must be focused on the `bio-medical' factors involved and not just simply managing the `psychological' issues. Whilst I welcome the fact that NICE conducted an investigation into ME/CFS, I do understand and empathise with the concerns raised about the findings. The recommendation that patients with ME/CFS be treated using an `Activity Management Programme' made up of Cognitive Behavioural Therapy and Graded Exercise Therapy does not follow the World Health Organisation guidelines which categorise ME as a neurological condition. In failing to recognise the bio-medical problems of ME sufferers, the NICE guidelines also fail to recognise the needs of ME sufferers. To help address the unique challenges posed by a complex and ...

They say that narrative is everything; it's how well you tell your story that counts today. That must be true for the psychiatric lobby have got where they have , not on the basis of sound science or reasoning, but upon a fantasy that suits the Insurance companies , a fairy tale, a made-up story, a prejudice-fuelled myth that has destroyed so many lives. It's all hot air and illusion. Malcom Hooper's and Margaret William's masterpiece forensically, in excruiciating detail strips bare the psychiatrist's flimsy clothing and exposes them as the lunatic, madly dangerous fanatics that they are; comparable to the Nazis. How incredible that CoCure has published this - for they have explicitly told me, in the past, they do not publish any material linking the psychiatric lobby to the Nazi party. Well, how else can you draw the stark comparisions ? After all it was the Nazis who first coined the term : "the undeserving sick", so beloved by the insane psychia...