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 help. God knows. They are far

Stonebird : the Lived Experience of Severe ME A Response to the ME Association Survey  “Managing my ME : What people with ME/CFS and their carers want” Greg & Linda Crowhurst 28th May 2010 : Permission to Repost This survey is hugely disappointing,  because it still perpetuates the myth that management is all that people with ME need; if only it was done better. The Survey just does not ask the correct  questions :  1. “ do you want a Biomedical service ?”;  2. “do you want specific  Biomedical ME tests not currently available ” ?; 3. “and do you want real Biomedical treatments,rather than therapy, charading as treatment “? The Survey does not adequately  reflect  that there  is an alternative path to the current psychosocial management approach; the biomedical path. This is even reflected in the unfortunate tile of the survey, which is already validating a “management “approach, right from the beginning.  There are no apparent new options or innovative questions in this su

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

ME : Your Worse Nightmare (for ME Awareness Week 2010 ) I want you to think of the worst illness you have ever had Remember how dreadfully ill you felt How everything you normally did suddenly became totally unmanageable Perhaps your head hurt so bad that you had to lay in bed all day to cope Perhaps you felt or were utterly sick and food made you feel even worse Perhaps you were dizzy ,off balance and disorientated so that you had to sit or lie down or fall over Perhaps you had an operation and felt weak, groggy and sore. You must have felt out of synch with the world and unable to participate in it like you normally would Now I want you to add pain Pain that spreads all over your body Not just one sort of pain but pain that throbs , pain that burns, pain that itches and screams at you pain that crawls up your skin and invades every millimetre of your body: Your nose, your eyebrows, your eyeballs,your ears, your scalp, your neck, your front, your back,your toes, even the so

On the eve of the UK Election : A  Manifesto for the ME Party . Greg Crowhurst 5th May 2010  (Permission to repost) Dear ME Patients and Carers, Our circumstances are largely driven by the eroding of facts about ME through the clever use of language and the compromising of truth; miles away from any hope of proper research, treatment and a cure. Why do you  have to endure condescension and dismissal by neurologists , doctors, nurses , social workers, not interested in your neurological symptoms? Why do you have to endure inappropriate therapeutic techniques, for your serious physical disease,  as "treatments"? Why do you  have to endure the denial of the WHO categorising of your neurological disease in the NICE guidelines and the promotion of a biopsychosocial approach to your  disease, when it is not a mental health illness? Why do you  have to endure a complete lack of biomedical ME clinics and this  dearth of biomedical ME clinicians ? Why do y

Screaming Greg Crowhurst , May 2nd 2010 Days when I could travel to see my widowed mum, days when I could go to a meeting, a conference, chair a meeting, be at a meeting, get on a train, go on a bus; those days .Those days are gone , are behind me now. Nowadays , each day gets narrower. Decreases in width to the length of a garden bench, if one is lucky , or to a chair arm, where you sit perched , your arm around your loved one. Feeling her muscles tense , like wire, with pain and suffering. This is what I am talking about now. Now here is what the Health Authority have just sent out, here is their vision , hot of the press, for a "CFS/ME" service :"   The main symptom of CFS/ME is a feeling of unusual and excessive tiredness " . You can guess what follows next : "   There is now good evidence for management strategies such as activity management, which enable people to control and improve their fatigue levels. This is done by addressing how energy is used