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This is a picture of Severe ME. This is a picture of unendurablehead-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, coldhands. 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 someone seriously, neurological…

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, many hours ,…

Stonebird - this is the beginning, not the end :a response to the new ICC Criteria Greg Crowhurst 24th 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 of the medical insuran…

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 patient’s premorbid ac…

..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 TheDSM-IIIwas almost certainly more “reliable” than the earlier versio…

"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 may well think I was about …

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 uncomfortable …

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 agend…