Stonebird

This is a picture of Severe ME. This is a picture of unendurable   head-pain, yet still trying to find the peace within it to cope. This is a picture of physical illness. This is a picture of numb, cold   hands. This is a picture of someone, who can go nowhere, do nothing, bear no noise or light, stand no touch, think no thoughts. This is a picture of endurance, of pain upon pain, upon pain, going backwards 17 years going forward to infinity, throbbing in agony, pulsing with persecution. This is a picture of isolation, of separation, of denial. This is a picture of someone who receives no medical treatment. This is a picture of someone for whom there is no hope of a cure; all the time millions of pounds are wasted on psychiatry to the neglect of biomedical truth. This is a picture of someone who is misrepresented, misinterpreted, mistreated. This is a picture of the hidden suffering of ME. This is not a picture of someone with a mental health issue.  This is a picture of so

Caring : it will easily  break you,  or it will take you places and teach you things  you never thought possible. So long as you stay defiant, that is. You've got to keep fighting, especially in the face of Very Severe ME. I write this with a tear in my eye. Yesterday I received news that I have passed my WebMaestro Advanced Web Design course with the grade of distinction; how did I ever make sense of that JavaScript ?? But hey I did. I did  it to keep myself going and growing. Now  I   have more more equipment to fight with, tools I can use to strip bare the misinformation that in the words of Paul Simon, "follows us like a plague". I have  the  ability  and skill to build  practical applications like our  ME Symptom Tool and cutting edge professional -standard , ME-friendly websites;  my diploma proves it. Next I am studying Flash and Graphic Design. That's some achievement and I am proud of it :  in the face of endless pain, untold suffering, so many,

Stonebird - this is the beginning, not the end : a response to the new ICC Criteria Greg Crowhurst 24 th July 2011 ( All captions in the film above, are taken from the ICC.) The health needs of  people who have ME are  beyond neglect. The new ICC Criteria are  the beginning, not the end point , of much needed change. Until we have an adequate classification system we cannot begin to safely and adequately provide a proper biomedical health service for people with neurological myalgic encephalomyelitis. By creating this explicit  criteria, a clear focus has been been established  around which a matrix of truth now needs to coalesce so that new tests, treatments and approaches , for people with ME, can be lobbied for and brought about. For many years, the  Wessely School , which  has immense influence over Government policy,  has been aggressively promoting a conceptualization of Myalgic Encephalomyelitis as a mental illness , a conceptualization  that also  fits the needs o

New Myalgic Encephalomyelitis International Consensus Criteria What  a great day ..here are six knock -out  recommendations, there so many,  from the just published    Consensus Criteria - with this under our arm, we are ready to fight as never before. 1.The six-month waiting period before diagnosis is no longer required. No other disease criteria require that diagnoses be withheld until after the patient has suffered with the affliction for six months.     2.Using “fatigue” as a name of a disease gives it exclusive emphasis and has been the most confusing and misused criterion. No other fatiguing disease has “chronic fatigue” attached to its name – e.g. cancer/chronic fatigue, multiple sclerosis/chronic fatigue – except ME/CFS.   3.“Malaise – a vague feeling of discomfort or fatigue is an inaccurate and inadequate word for the pathological low-threshold fatigability and post-exertional symptom flare.   . 4.  Symptom severity impact must result in a 50% or greater reduction of a pa

DSM5 Greg Crowhurst 20th July 2011 ..Here’s what they are saying about DSM 5 - which appears to be based on not much more than personal opinion. The putative diagnoses presented in DSM-V are clearly based largely on social norms, with 'symptoms' that all rely on subjective judgements, with little confirmatory physical 'signs' or evidence of biological causation.  The criteria are not value-free, but rather reflect current normative social expectations.  Many researchers have pointed out that psychiatric diagnoses are plagued by problems of reliability, validity, prognostic value, and co-morbidity. Response to the American Psychiatric Association:  DSM-5 Development .The British Psychological Society thanks the American Psychiatric Association (APA) for the opportunity to respond to the DSM-5 Development.    http://apps.bps.org.uk/_publicationfiles/consultation-responses/DSM-5%202011%20-%20BPS%20response.pdf   The   DSM - III   was almost certainly more “reliabl

She is still badly affected by the BANG, BANG, BANG, THUD, of laying paving stones, last week, next door; they may as well have come into her bedroom and laid into her with fists and boots. I mean badly affected; in a monstrous  place, her body quivering with multiple symptoms; the agony in each breath,  that I cannot reach. The abomination that is "sound-sensitivity" in Severe ME  makes me raise my head and scream inside . Okay,  in an hour or so, builders will start work, next door, digging up a concrete path, a few yards away from Linda's bed, with a pneumatic drill. They might  as well be popping in  to give her a good bashing about the head. She's too ill - did I mention that - to get up and get out , she's too ill to be here , without severe consequences. Long after the concrete has dried, her body will still be shaking from this and the pain will be howling .  I wish we still had our dog here , to help us . For there's only me now, fac

"Severe ME is utterly devastating.   It's time for proper research and proper care".   That is the simple, but vitally important message that Emily is desperate for the world to hear.   Beginning months ago, she has written a letter which she hopes will spread her message across the Internet and garner support for those severely affected by ME.   Please help her achieve this.    (Permission to re-post) Emily's Appeal I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned 30. I still have ME. ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties.   Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease. My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you ma

The 25% Group and Stonebird have just posted a joint response , which can be found here : www.stonebird.co.uk/severemesubmission.doc

Have you looked at the DSM5 proposals yet, for Simple and Complex Somatoform Disorder yet ? In their dreams this is the label  psychiatrists salivate over for  ME, Fibromyalgia  and such like.  As I work on a response, I cannot believe that anyone takes this dippy bunkum seriously - except that it's deadly cold sober  indeed. As Dr   James Howenstein writes :  "When you look below the surface at the specialty of psychiatry what you uncover is so ludicrous it is difficult to believe that it is really true. Prominent psychiatrists from all over the world gather annually for a meeting at which new diseases are invented. There are no objective findings that establish the diagnosis of these diseases. These new diseases are included in the Diagnostic and Statistical Manual of Mental Diseases.  Potential new diseases are discussed at these meetings and new diseases are voted in or out by a show of hands .  Among the new diseases are social anxiety disorder (everyone who is unco

I'm tree-cutting in the heat; because if I didn't, you see, I would explode. My head trundling,  I am  figuring out  what to do . Linda's ear and jaw throb  in pain, in  unison with her toes,  pins and needles are darting up and down her whole body ; a fraction of what is going on : how can she be expected to cope with this ? On a bad day, you feel like the most useless person on earth, because you can't help. Your mind races  , so tired, down well-worn routes, confined by  incomprehension . Even if we had  the best consultants on the planet here; some chance, would they have a clue? This is Very Severe ME; no one's doing any research. Days like this;  the isolation is annihilating . My wife, is seriously ill , deteriorating, arriving at  levels of agony previously unknown. The tree had died.

Everything is dancing around me And I feel stretched beyond my limits by endless opportunities and endless lurking pitfalls My mind tries to catch hold of each thought as it flies by The world seems so busy Even here in this quiet hamlet Beside my stagnant pain-seared life People whirl about Creating changes beyond my control Persecuting me by their ignorant actions That assault my senses And disturb my limited order Decision making seems utterly beyond my whirling head, As I try to remain still in my sea of fog Punctuated by bright movement That struts and stabs and twirls And leaves me in a fuddle of anxiety Not knowing what to do to minimise the damage And make my own straight path Through the centre of what seems like deteriorating chaos to a malfunctioning mind and a tormented body longing for peace and clear sight. Linda Crowhurst

Incredible how the BMJ's glowing endorsement of "poor" Simon Wessely , safer in Iraq and Afganistan apparently, than here among the UK ME Community, coincides with my reading  of  Martin Walker's new book : "Dirty Medicine The Handbook".  Walker devotes a whole chapter to what he calls the "Health Corporatists". Some of the names might surprise you;  Stephen Fry for example.  The paragraph on  Charles Shepherd  may or may not come as a shock. Simon Wessely's listing extends over two pages - the arguments are well aired. It is the  Introduction to Dirty Medicine the Handbook that  really bites. Walker's critique of the "intellectual rot",  now endemic in science , is blistering  and perceptive- especially as I struggle through yet another day of screamingly severe, hopeless agony for my wife. He argues that "next door's dog" could have come up with the UK Science Council's definition of science;  whose real